Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts

Sunday, 15 January 2017

A Monster Calls, Grief, and Guilt.

*Spoilers for A Monster Calls in here*

This week I went to go and see A Monster Calls at the cinema, which is a story based on one of my favourite books. The story is about a young boy called Connor whose mother is sick, and every night a Monster comes to visit him to tell him stories about life, but eventually Connor must tell the monster a fourth story – his truth. This is a story that hits very close to home for me as you can imagine, and I knew going into the theatre that I was probably going to cry. I took all the necessary precautions – I went on my own (just me and a couple of pensioners quietly crying in our respective corners, it was great), took some tissues and plenty of water, and wore my favourite comfy clothes.

Whilst I knew I would cry, I don’t think I was prepared for how much I would cry. I read the book nearly two years ago so I had forgotten most of the details. So I was pretty shocked to find myself crying at practically the opening scene. It was a scene that most would probably not think twice about – Connor is getting ready for school alone, making his breakfast, putting on a load of washing and generally just doing anything that needs to be done before he goes to school. Before he leaves, he checks on his mum who is sleeping in her room, evidently tired and sick. It was like someone had taken a scene directly from my own life, reworked a few things and put it on screen.

There was so much to this film I could relate to – how everyone around you is talking about you behind closed doors, but won’t answer your questions. Taking on responsibilities you normally wouldn’t have had to until you were older. Teachers approaching you and quietly asking in class if you’re holding up okay and that you can always talk to them. Being whisked away to a family member’s house who you know, but don’t necessarily get on great with. But the thing that rings so true with this story is Connor’s ultimate truth – which is that he wants it all to be over.

I remember the moment extremely vividly. I had spent most of the day in the hospice, reading and eating pizza and wandering around. I didn’t want to see my Mum anymore, she couldn’t talk anymore and was barely ever conscious and I didn’t want to remember her like that. So I got taken home by my stepmum and had been home about an hour when my brother and dad walk through the door crying. And they told me she was gone.

I felt many things in that moment, but one of the strongest emotions was relief. Relief that it was over. And I know that sounds bloody awful but it had been four years – four years of her going through countless chemo and hospital appointments. Four years of growing up too quickly and having to constantly face the idea of my mum dying when my friends seemed to be just facing the idea of which boys they liked (which I know of course, they all had other stuff in their lives as well, but that’s how it felt). I had watched my mum lose her hair, heard her crying at night when she thought I was asleep, never known when I was coming home from being out with my friends what I was going to find when I got home. And finally it was over. She was out of pain, she wasn’t suffering anymore. And in my fifteen year old mind, I thought I could finally have a somewhat normal teenage experience (of course what 15 year old Lily failed to understand was that I know had to deal with a whole other beast – grief and loss).

I felt guilty about that feeling of relief for so long. I thought I was an awful person for feeling that when I was told that my mum had died. I’ve never really told anyone other than my therapist for fear of being judged harshly. Like Connor, I just wanted it all to be over. I was tired of seeing her in pain.

I also just want to clarify here that yes, I lived with a person who had cancer, but I can of course never understand what it is to live with cancer and to face your mortality in that way. Yes I had to watch all this happen to my mum, but I never had to actually go through it. I can never understand that pain and would never want to undermine that.

Of course I felt other things one would expect when I was told my mum had died. Sadness, anger, fear of a future without her. But relief was also there. Like Connor, this is just my truth.

Sunday, 25 September 2016

Milestones without My Mum

I think it goes without saying that every day when you lose a parent at a young age is difficult. I’m 100% being truthful when I say that my mum pops into my mind every single day, even 5 years after her death. But there is something especially bittersweet about her absence when I’m about to hit a milestone.

My mum died of cancer when I was 15 years old, and she was my best friend. She came to all of my school concerts and plays, all of my riding lessons and shows as a child, every single parents evening and I know I was so lucky to have had a parent who could and would do that. Losing her at the age of 15 means that most of what people consider significant life events or milestones, I have experienced without her. My GCSE Results, my A Level results, my first kiss, my first time moving away from home, my 16th and 18th birthdays have all happened without her. And it’s not just these big events where I feel her absence; I remember wishing she could come and see my GCSE Drama production, or to see me off at the airport when I went to the USA for three months. Every birthday and Christmas is somehow tainted with her absence. And don’t even get me started on mother’s day.

For the first few years there was an extra factor into all of this; jealousy. It’s an ugly thing to think and I’m not proud of it but I couldn’t help but feel on my 16th birthday, or when I got my A level results that my brother got to do this with Mum. He’s three and a half years older than me and was in his first year of University when she passed away. She wanted to go up and help him move in, but she couldn’t due to being knee deep in chemo.

I remember opening my results for my GCSE’s quite vividly; I went alone because I didn’t want my dad to be there and he had work anyway. I went in, hands shaking and tore through the envelope. After a look through, I was pretty pleased with my grades and called Dad to tell him how he did. He was elated and very proud. After I hung up the phone, I almost went to make another call. But then I realised I couldn’t. I looked around the hall for my two best friends, who were both standing with their own mums a little way off. It felt like I’d been punched in the gut and I wanted to burst into tears. It felt so unfair that everyone else got to tell their mum’s how they did and I didn’t. I quickly composed myself though and got on with my day – I didn’t want to cry when I’d actually gotten pretty good results. I know that had she been alive I probably would’ve told her to stay at home as well, but it was the option to do so that I wanted. God, what I would’ve given to have been able to do that.

I found moving out to University for the first time particularly difficult. I remember having a dream the week before I was due to go. My mum and I were driving down a road, and then she was helping me unpack things in my room, and then we went to a café. I don’t remember the specifics but I remember feeling warm and happy. And then I woke up, and for a few blissful moments I thought it was true and would happen. And then reality crashed into me, that that was never going to happen. Moving in was okay in the end, but I was moving boxes and walking around my new campus feeling hollow and off the entire time. There were a few confused looks when I introduced my Dad and my Stepmum and I knew what they were thinking. What about her mother? Where is she? But most people didn’t ask. Apart from my flatmate later on that day, who I know got an answer she wasn’t entirely expecting. Not the best way to start off a relationship.

As I’m writing this, it is the night before I move into University for the second time. And I can truthfully say that I am in a much better place this time. A mixture of therapy and taking time to grieve and come to terms what happened means I am more accepting this time around of my situation. Maybe it’s because I’ve done it before and it’s not as ‘significant’ but I think it’s a good sign anyway. My 21st is later this year and I’m apprehensive as I always am for big birthdays because I just have no idea what I’ll feel like on the day. But I know in my heart that either reaction is totally okay. I do think about the future; how if I ever get married she won’t be there, if I ever have kids she won’t get to meet the grandchildren I know she so sorely wanted to meet. But I’m starting to accept this reality more than be angry about it – and I know that wherever she is, she’s watching, and she’s proud.

Monday, 6 June 2016

My Breast Cancer Scare

You might have noticed that I was pretty MIA on Safe Space last month, and if you follow me on social media then you’ll probably know why.

In May I had a breast cancer scare.

I knew that I wanted to write about this experience but I wasn’t sure what I wanted to write about exactly. It’s all still pretty raw for me emotionally and I don’t want to go into the ins and outs of what happened. I’m sure you can all imagine what it entailed: a lot of doctors and hospital appointments, a lot of tests, a lot of waiting for results and a lot of anxiety.

Thankfully a story about being diagnosed with breast cancer is not a story that I have to share with you today and I have now been given the all clear with no further tests required. So I suppose that what I want to talk about is how this experience has changed me and what it has taught me because it has changed me, significantly.

For the past year I’ve been working on battling my anxiety and fears with my therapist, this usually involves taking small but steady steps one after the other over a period of time. When I found an unusual change in my right breast it forced me to abandon the baby steps that I’d been working on and run up onto a whole other staircase right at the very top of the anxiety building. Me, the girl who struggles to leave the house alone, suddenly had to go through a very real and terrifying situation that most people would find hard to deal with never mind someone with severe anxiety. I definitely felt like I’d been chucked in at the deep end and I was petrified. I couldn’t sleep, I couldn’t eat, I couldn’t function. I spent most of May watching mind numbing daytime TV, seeing my counsellor and just trying to get from one doctors appointment to the next without breaking down, everything else went out of the window.

When I was given the final all clear, no further tests required, I was ecstatic. I’ve never experienced such pure relief and joy. Over the past month it felt like weight after weight was being piled on top of me and I was shaking and struggling to hold that weight, certain that the next weight added would be what made me crumble. Now I could finally put those weights down and it left me feeling strong. During this time I really got to know my own strength and just how much I can cope with so it suddenly became easier for me to pick up similar fears that carried the same weight and deal with them. I’ve since started to conquer some of my biggest fears like they’re a piece of cake.

When I was entertaining the very real possibility that I might have cancer the thought that kept running circles in my head over and over was but I haven’t even really started to live yet. I’ve spent so many years trying to protect myself from any harm coming my way by not leaving the house, carrying out OCD rituals and avoiding what my brain deems to be scary and unsafe places but in building a protective bubble around myself it didn’t keep something bad from reaching me but it did keep a whole lot of good things from touching my life.

Having this scare made me realise that the bubble I built around myself for protection hadn’t worked. I wasn’t immortal, I wasn’t immune from illness, and the safety precautions I have painstakingly taken for years hadn’t worked in keeping me safe. Danger had still found me, it had still worked its way into the bubble and in that moment the bubble popped. It was like being told that this miracle safety drug that I’d been taking was actually a placebo and with that knowledge the anxiety and depression came rushing back in waves.

After speaking to my counsellor I realise that at that moment when the bubble popped I had what they like to call “the breakthrough.” The reason why I was suddenly feeling my anxiety and depression so strongly again was because the usual unhealthy way I used to cope with it before like avoiding leaving the house and checking a switch was off a certain number of times wasn’t working anymore and so suddenly the anxiety and depression that I could usually contain and control this way was now flying around all over the place creating havoc in my brain.

My counsellor told me in our last session that now comes the hard part, now I have to learn to manage my mental illnesses in a healthy way and find new ways to cope now that the illusion that the bubble brought me has been broken, which is scary but also exciting. I had the realisation that I couldn’t protect myself from danger, that it’s actually out of my hands, that it doesn’t matter what I do to feel safe it actually doesn’t keep me safe and in knowing that there is fear but also a greater sense of freedom. Because if something as scary as cancer can find me in my own bubble then heck why not do what I want to do if I’m going to be in danger anyway? Why not go for a walk in the park? Or go shopping? Or try something new? If keeping myself safe is an impossibility then why not make my new priority doing what I want to do with my life so that next time I’m faced with my own mortality the first and overwhelming thought in my mind isn’t but I haven’t even really started to live yet because if this experience has taught me anything it’s that life is too damn short and I’ve already wasted so much time on what ifs? I’m one of the lucky ones and it is my duty to myself to make the most of the time that I have on this earth. To love deeply, to talk loudly, to live fully and to never let fear of the unknown hold me back again.

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I wanted to end this post by highlighting a brilliant campaign called #FeelitontheFirst started by young breast cancer survivor Nalie Agustin that encourages people to check their breasts for any changes on the first day of every month. This allows you to become really familiar with what your breasts look and feel like so that you will notice any unusual changes if they should occur. Breast cancer can happen to anyone of any age, any gender and any lifestyle and is highly treatable if caught early. There is a lot of false information about breast cancer on the internet so if you find a change stay off Google and talk to your GP, you will never be wasting anyone’s time.


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Friday, 1 April 2016

My Nan, My Hero

Jo and her NanOn Monday 4th April, it will be a year since my nan died. She had lung cancer, which she had fought and was told she had beat, and was in remission - only to be told about a month later that it had actually spread to her brain, and she had six months left. She was here for another nine. As I have recently talked about how hard it is to be without her already, I thought that I would instead talk to you about how she was - and is - my hero, my role model, and my inspiration.

People are multifaceted, complicated beings, and Nan was no different. The overall image I have always had of her is: my Nan, the party animal; strappy heels and low cut tops; perfume, lipstick and chewing gum; a dry martini in one hand and a cigarette in the other. Dancing, flirting, swearing like a trooper, and bragging that she could drink anyone under the table. She was a good ol' cockney bird; confident, fierce and wouldn't take any crap from anyone, and I was in awe her.

Nan was confident in how she didn't care what anyone thought of her. She lived very much by the saying, "If you've got it, flaunt it," and she definitely had it. People were drawn to her; she was always laughing, never taking herself too seriously, and would flirt with anyone. She was fierce in that she had a voice and she used it. If you wound her up, you would bloody know about it. She was assertive, and would stand up for herself and hold her ground, and defend whoever she felt needed and deserved to be defended. When I was younger, I always wanted to be just like her when I grew up; just as confident, just as fierce.

But there was another side to Nan; a gentler, softer side. Nan had a huge capacity to love. She had two daughters and four grandchildren, and you could never doubt how much she loved us. She would do anything for us, and at times, she did go above and beyond. But she loved far more than just us six. As a child minder and a foster carer, she opened her heart and home to countless children for around 20 years. I can't imagine what it was like to have these children come to live with her, get to know them and love them, and then say goodbye - over and over again. I remember her breaking her heart when one baby, Chloe, and, later another, Grace, had to move on.

But there are those who never did leave, those she has always considered family. One girl, Debbie, became a woman who Nan considered a daughter, who considered Nan her mum, whose children were Nan's grandchildren - who I now consider my aunt. Nan also stayed in touch with a family whose three children she child minded, one from when he was a baby right up until he finished school. They were also "hers", and they felt the same; I've heard one of the three talk about how she was raised by two strong women - her mother and my Nan. Besides those people, I don't think it's possible to count the number of children who have called Nan "Nannie" over the years; her actual grandchildren, Debbie's children, great-nieces and -nephews, and those who stayed with her for only a short while. She's touched more lives in her 70 years than most of us could hope to.

When it came to those she loved, Nan was generous and forgiving, more so than she would be to anyone outside her unconventional family who might hurt her. And she had, at times, been hurt. But with us, her capacity to love was matched by her capacity to forgive. And I sincerely hope I do and will always love as fiercely and as openly as she did.

At 00.19am on Saturday 4th April 2015, she passed away, surrounded by people she loved and who loved her. Her hands were held, and she was told how much she was loved. She was there, and then she wasn't. I will never forget that night.

The past year has been hard and painful, and I miss her more than I could ever explain. But I remember who she was: the woman who danced and laughed. The woman who wore self-confidence like a second skin. The woman who loved with her whole heart. The woman who changed lives. The woman who taught me so much, and who, without knowing, showed me the kind of person I wanted to be.

My nan was an amazing, incredible lady. And I want to be just like her.

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Wednesday, 2 March 2016

Grief in all its Sh*tty Splendour

By the time you are reading this post I will have been to my Grandpa’s funeral. I wasn’t sure how it would go but based off how I’ve felt since he died on the 13th of February I thought I might get through it without turning into the sodden mess I was at my Uncle’s funeral in December. Oh yeah, this *is* my second funeral for a close relative in about two months, I’m more than ready to be done with death at this point. Like seriously, fuck off death.

You might be wondering where the hell I’m going with this after that opening – basically grief is a weird mess of feelings that after three family deaths in the last 5 years I still don’t fucking understand. Every time I’ve lost someone, I’ve felt so differently to the point that I don’t even know how I might react in the future. Not that I want to contemplate that right now. Not even a little bit.

Back in 2011 my Granddad died suddenly and I’ll be honest it fucking floored me. Hell it still bothers me from time to time and it’s nearly five years since it happened. At the time I took a rather odd method to dealing with things – I wrote a blog post about it (here) and since then I’ve had a dangerously morbid sense of humour when it comes to talking about the subject of death. By making awful and borderline inappropriate jokes I stave off the constant crying that might otherwise occur, while possibly at the same time making people think I’m slightly unhinged.

I was so angry and devastated for months after my Grandad died, it was such a sudden occurrence that we were all left reeling at the void that had opened up beneath us. Just processing that he wasn’t there anymore was impossible. I had the distinctly dubious luck to be present at the hospital when he passed along with the rest of my family so now I have a ghoulishly detailed memory of that god-awful Thursday night to haunt me for likely the next twenty years.

This is the version of my Grandad I want to remember. :D

With hindsight comes a few consolations. While I may rail bitterly against the knowledge that my Grandad never got to meet my boyfriend Mark (known to Twitter as Le Boyf), or that I’ll never be able to hear him sing at my wedding one day (goddamn just thinking about this makes me choke up), I have to remember that not long before he died my Grandad was diagnosed as being in the early stages of dementia. If he hadn’t gone when he did, he could have slid away from us bit by bit until he was less than a shadow of the vibrant man we loved. I now understand all too well that it was a very back-handed blessing that my family was spared that awful experience. At least that time.

My Uncle’s death in December was grossly unfair and heart-breaking, but it wasn’t a surprise – he had had a massive stroke in April 2014 and by some fucking miracle survived. Only for us to learn several weeks later that the blood clot had been caused by several brain tumours and that he likely only had 4-6 months left. Which obviously was a thorough kick in the spine once we were already on the floor. He was only in his mid-50’s and had already battled melanoma twice before, surely he’d had far more than his fair share?

The only two positive things that came from my Uncle’s diagnosis was that although he couldn’t really speak or use his right side due to the stroke, he was still unmistakeably the same man in his mind. The other positive thing was that the 4-6 months prognosis ended up being 18 months which I will never stop being grateful for. I’ll be honest now, the women in my family are more than a little high-strung and opinionated so it seems to be the trend that we gravitate towards very chill and easy-going guys who don’t mind living with our nonsense. My Uncle Peter was quite possibly the most laid-back person I’ve ever known and had a fantastically wicked sense of humour that he kept the entire time he was battling the cancer.

The last time I saw Peter was at a joint birthday party for me and my Grandma last October (we’ve always had joint parties since our birthdays are on the 7th & 11th). I didn’t see him again because his health started to deteriorate later that month and continued to worsen through November so both me and my sister were told that it was best if we didn’t see him like that. I do not regret that decision in the slightest.

The birthday party was held at my sister’s flat in Nottingham so from my house takes a 15 minute drive and a 30 minute tram journey to get there. When Mark & I walked onto the street where her building is, we were met with an odd sight. My cousin Jamie, my Aunt and my Uncle Arnold were cleaning the roof of my Aunt’s car in one of the parking spaces.

It turns out that as my Aunt was driving round Nottingham’s god-awful ring road she had to get round two cyclists who were hogging most of a lane. As they passed, my Uncle Pete thought it would be *hilarious* to stick two fingers up at the cyclists, using the one hand that still worked. Apparently the blokes weren’t too impressed by my Troll Uncle’s antics and when they were stopped next to the car at some traffic lights soon after, took it upon themselves to throw a carton of milkshake onto the roof, resulting in the mess that I saw them cleaning up.

My Aunt was beside herself and threatened to put mittens on Pete if he dared do it again. Pete being Pete, spent pretty much the entire afternoon flipping the V at us all every chance he got, grinning like a fiend as we howled with laughter. There is a picture from that afternoon which I will cherish forever because it so perfectly epitomises who my Uncle was and I’m so glad that it’s the last memory I have of him.
Auntie Michele & Uncle Pete

Losing him was such a heavy blow but at the same time, we knew he was no longer suffering and it would be callous to wish for him to still be here if it meant he was in prolonged agony. He could have died straight out from the stroke and we would have been left shell-shocked and bereft like we were after Grandad died. But we were astonishingly lucky to have been given the gift of 18 more months with him when we thought we had only a handful.

We had the time to say goodbye on our terms, time to fortify our hearts against the wave of grief that was looming on the horizon, to brace ourselves to weather the storm. We could hold onto each other until the surge subsided and then pick our way back to the shores of normality. I’m not sure if we’re in the clear yet. But one day we will be.

For my side of the family though the waves swept us out again in February. My Grandpa (I will always love how everybody seems to have different epithets for their maternal & paternal grandparents) died suddenly on the 13th February but on this occasion I did not cry. In fact I only actually cried on Monday at the funeral right at the end when the final song started to play – Josh Groban has a lot to answer for. Before you really start to question my sanity I need to explain why this third death has affected me so differently.

My Grandpa had been ill for a long time. He was diagnosed with Vascular Dementia about a year or so after my Grandad died. I honestly believe that the shock of his death probably hastened the onset of my Grandpa’s illness. I don’t know how usual it is for both sets of grandparents to be friendly like mine were/are - for as long as I can remember my Gran & Grandad have got on really well with my Nan & Grandpa. We had them all at my parent’s house every Christmas and we even took them on holiday to Florida with us twice.

Grandpa Charles & Grandad Don (L+R) at Epcot


But over the last few years dementia slowly robbed my Grandpa of everything that made him who he was. I think it was sometime in 2012 or 2013 that I went to my Nan’s house for the first time in several weeks or maybe a couple of months and was so struck by how different he was even then that I started to cry. He was starting to hunch over and shuffle his feet as he moved and my Nan had to guide him back to the sofa.

That was the top of a long slope which Grandpa kept sliding down, becoming less and less able to function, more and more dependent on my Nan until she was unable to leave him alone for more than a few minutes without him getting agitated. For the last 9 months or so my Nan has effectively been house-bound caring for him up until the start of December when he finally had to be moved to a hospital as she was no longer able to look after him at home.

Like with my Uncle I hadn't seen my Grandpa in several months as my parents felt it would only upset me and my sister to see him how he was - unable to really move by himself and so far gone with Dementia and Alzheimer's (that little shit of an illness rocked up to the party eventually) that often he didn't recognise my Nan or my Dad and would be shouting and swearing at them. I didn't argue with my Mother about this, it was awful enough seeing him sitting vacantly on the sofa, barely aware of what was going on around him let alone seeing a complete stranger effing and blinding at his family.

I think that's a lot of why I'm not all that sad now. To my mind my Grandpa has been dead for a couple of years already - at least the essence of him has been gone for that long. The dementia was like a vicious sprite frolicking through his brain, gleefully shredding everything that made him the person I recognised as my Grandpa. All that we saw each day was the hollowed out shell left behind.

I'd be lying if I said I hadn't wished he'd died sooner. Seeing the increasing strain and distress that his worsening condition caused for my parents and my Nan, made me wish that he would just slip away that last little bit during the night so the awful drawn-out trauma could finally be over. Every day that he continued in that shade of an existence was another day of good memories that were stripped from the time Before. It's hard to remember now how he was before 2011 because the fucking Dementia has seared it all away, leaving me with only the memories of the man who was no longer my Grandpa.

That Saturday when we got the phone call from my Nan to say that he had died, I felt a numbness that shocked me as well as an even more disturbing sense of relief. Finally. The suffering was over for him at long fucking last and the rest of us could stop holding our breath. 

At the funeral there were so many people that some had to stand at either sides of the room. That was wonderful to see. My Grandpa was a very popular and well-liked man and I envy all those old friends and work colleagues their happy, untainted memories of him. I actually read a poem at the beginning of the service. When I agreed to do it my Mother was impressed but for me I didn't anticipate that I would be too upset to manage it. After the service everyone kept congratulating me on how well I had done with the reading and I honestly felt like a bit of a fraud for *not* having been more upset about it.

I don't think many people would quite get what I meant if I said that I wasn't sad because I'd already mourned the loss of my Grandpa over the months that he vanished before our eyes, so I kept nodding and thanking all the people I didn't know as they told me how brave I was. Brave is the last word I would have used for me on Monday.

The point that I think I'm trying to make is that Grief and Death are such intangible lethifold-esque beasts that you can never guess whether they'll sneak up on you and devour you whole, or whether they'll rip apart those you love and leave you standing in the remnants, too shell-shocked to feel anything. You never know what you'll feel until the feelings hit.

I hope this may have meant something to some of you, and that you found a nugget of happiness from the few happy moments I've shared. It's been incredibly hard to lay out all these thoughts so I do hope they make sense. 

Thank you so much for reading.