I Am Depressed

This isn’t going to be a particularly cheerful blog post, I will be talking about mental illness. If you’re feeling vulnerable, please read with caution.

I am depressed. By that, I don’t mean being a little bit sad, I mean full blown life altering depression, resulting in me being in hospital. People are using the term “breakdown” and to be fair, that’s quite an accurate description. I don’t feel ashamed about the fact that I am depressed.

Depression is ugly At times, it has felt like there’s been no way out. There aren’t any clear cut answers and it’s been more than a little bit chaotic. It is so much more than just being sad. It’s a feeling of endless hopelessness, combined with a fear that in unexplainable. It’s nothingness. It’s not knowing how to and not wanting to carry on.

Having said all of that, I consider myself as pretty lucky. When things started going wrong, my GP very quickly referred me back to mental health services, someone from the team rang me that same afternoon and the following Monday I had an assessment with the mental health team. I wasn’t expecting much, my previous experiences with the mental health team haven’t been positive, I’ve always been “functioning” meaning that despite any mental health battles, I’ve held down a job and coped (for the most part) without any intervention being needed.

This time, things were different. I was so depressed during the assessment, I could hardly speak. I couldn’t cry because I was too depressed to cry. Within ten minutes, a decision had been made that I needed to be referred to the day patient service at the local psychiatric hospital. I was shocked, scared but ultimately, numb, to this news because I honestly felt in a place whereby I was beyond help. I wanted to die. It’s a hard thing to admit, but I’m not going to shy away from it. By the end of the week, I had been assessed by the day service and then started the following week.

I’m now nearing the end of my two weeks as a day patient and will be transferring to a step-down service, run by the mental health team and Mind. Honestly? I am terrified. The walls of the hospital have been my safety and security. I’ve been under constant supervision and I’m scared about how I’m going to cope without that. But I’ll never know unless I try. I have got to try, for myself but also for the people who have had my back over the past few weeks and supported me when I have felt unsupportable. I’ll still have support from staff, albeit less intensively – I’m not expected to go out into the world alone just yet, thankfully. I could fall, I could fly, but I will not fail, whatever happens.

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There has been progress. Despite being physically unwell over the past few days (yay gastroparesis), mentally I’ve been okay. Last weekend I was counting the hours until I was back in hospital, I resorted to behaviours that I haven’t engaged in for years, and I mean years and the thought of getting to Monday morning and being back in hospital felt impossible. This weekend hasn’t been completely struggle-free but I’ve managed. I’ve used the advice and things that I had learnt in psycho-education sessions to keep myself safe.

Why am I writing all of this? Because I’m angry. I’m so bloody angry. I’ve struggled with mental illness for years and years, so maybe this was inevitable. But maybe not. The biggest trigger to this breakdown, or whatever you want to call it, has been my physical health. In the past 18 months, my life has changed drastically. I’ve gone from holding down a full-time job, saving to buy my own home and being a fairly independent adult to being on longterm sick leave, frequenting hospital more than I frequent pubs, with no real hope of moving out, being heavily reliant on my mum. Don’t get me wrong, I was still ill when I was working, but the diagnosis of gastroparesis and then Addison’s Disease has turned my life upside down. And I have had no support in dealing with that. There is a huge correlation between mental and physical health: you have a cold for a few days and mentally you feel like shit. Now imagine feeling shit, but more, every single day. With no escape.

Chronic illness, or any form, is life changing. But you don’t get the support in dealing with that. You’re expected to cope. Expected to just get on with it. That is not okay. I know of too many people from the chronic illness community who are now in hospital because of their physical health. I’m angry because I’ve been failed and I’m angry because so many other people are also being failed.

So yes, I’m feeling mentally stronger having been a day patient, but none of the underlying issues have been addressed. The trauma of my life changing so much in such a short space of time has not been addressed. No one has acknowledged the trauma of having to fight with medical professionals just to be believed. The medical traumas that I am unable to even begin to speak about are still being brushed aside.

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We have got to connect the dots between mental and physical health. One cannot exist without the other. I don’t know how to make the changes that need to happen. But I do know that this has got to be talked about more, to prevent more people from being failed.

March Favourites

Here we are, another monthly favourites blog post. I was too unwell to write a monthly favourites post for February, and I’m not going to lie, I missed it a little bit. It’s such a good way of looking back over the month and picking out the good bits; chronic illness can be miserable and isolating so it’s nice to remember that life isn’t always like that!

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Books

My standout book from this month has got to be Paper Avalanches by Lisa Williamson. I’ve read Lisa’s previous two books and fell in love with The Art of Being Normal but was underwhelmed with All About Mia. Put simply, Paper Avalanches was a beautifully powerful book that I read in one sitting. Looking at parental mental illness, through the eyes of a teenage young carer, it gave a fresh look at the stigma surrounding hoarding and how dangerous it can be. Ro Snow is a character full of warmth and wisdom, way beyond her fourteen years of age and her frustrations towards Bonnie are quickly shared by the reader. I hope this book wins all the awards that it deserves.

Another book which I have loved this month is Looking at the Stars: How incurable illness taught one boy everything by Lewis Hine. Diagnosed with a life-threatening brain tumour and water on the brain at 17 months, he wasn’t expected to survive. But Lewis proved everyone wrong; he’s not only surviving but thriving. In one Facebook post on his sixteenth birthday Lewis invited everyone to see how he faces head on the challenges from his ongoing illness, and he went viral. Thirty million views later, Lewis now spearheads a campaign, Friend Finder, to make sure no one ever faces childhood illness alone. In his book, Lewis reflects on his brain surgeries and continual health problems, which are a daily challenge. He is at high risk of sudden unexpected death in epilepsy (SUDEP) and has a pump in his brain just to keep him alive and experienced horrendous bullying. Lewis shares how he finds the strength to overcome all this and still lead a fun and fulfilling life. 

My third and final literary favourite for this month is A Girl Called Shameless by Laura Steven which is part of the Izzy O’Neil series. In Laura’s first book in the series, we met Izzy, a loud and confident teenager who was subjected to revenge porn, something which is yet to be criminalised in the United States and the double standards surrounding the videos, in terms of gender stereotyping and feminism. In this second book, we catch up with Izzy, two months post sex scandal, The Bitches Bite Back movement is gathering momentum as a forum for teenage feminists, and when a girl at another school has a sex tape shared online, once again Izzy leads the charge against the slut-shamer. This time she wants to change the state law on revenge porn. If you’re interested in politics, feminism and gender debates, this is a book for you.

 

Film and TV

I haven’t watched much on television this month, combined with needing a lot of sleep and binge watching the box sets of Waterloo Road (judge me if you must), there hasn’t really been enough time. That said, I’ve been loving the Great Stand Up To Cancer Bake Off and have chuckled away and the celebrities’ awful baking skills, whilst being left wondering how they actually function in real life.

 

Spoonie Favourites

I’m fairly sure that I’ve taken about Nuun tablets before, but they’re so great, I’m going to mention them again. Designed to keep you hydrated wherever your active lifestyle takes you, Nuun tablets are packed with optimal electrolytes, containing clean ingredients. I was recommended Nuun tablets by a doctor in London to try and keep my hydration levels up and now use them daily. I’ve noticed a huge difference in terms of my concentration levels, which is saying something, considering I often have the worst brain fog possible.

Because of how unwell I was in February, being admitted to hospital was looking very likely. I (like many people) find hospital environments really stressful and I became aware that I wouldn’t manage with just my iPad to distract me due to battery life and charging etc. This lead to me to buying a portable DVD player which has been one of my best purchases ever and it has saved me during the long nights of insomnia when I haven’t wanted to turn my TV on and wake my mum.

Odds and Sods

I’m ending this blog post on a slightly different note. At the start of February, a friend lost her long battle with mental illnesses and sadly died. Megan devoted her life to helping others, even when she was struggling immensely herself. Her death has left a huge Megan-shaped hole in the mental health community and people are still trying to come to terms with her sudden death. In 2012, Megan founded the Recovery Shoe Box Project, Recovery Shoeboxes are mental health toolkits containing items that help you cope when times are hardest and coping feels difficult. Each box will include items that might distract, pamper, soothe and motivate and they are personalised to the individual receiving them. Since Megan’s death, £8,785 has been raised in order to keep her project on-going as a legacy to her. The aim is to reach £10,000 and after that who knows. If you’re able to donate, it would be much appreciated.

 

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Simon Godsave and Recovery Shoe Box Project

 

 

 

 

 

 

This Is Not Consent

Unless you’ve been living under a rock over the past few weeks then you will have heard about how a girl’s underwear was used as evidence in court, during a rape case. In the trial, the defence lawyer told the jury “you have to look at the way she was dressed. She was wearing a thong with a lace front.”

The 27-year-old man was found not guilty of rape shortly afterwards.

This case then led to a series of protests about how wearing a certain type of underwear does not equal giving consent.

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As a teenager, I was sexually assaulted. If you want all the explicit details about what happened, then you’re in the wrong place, because this is not the place to share them. I find it hard to speak openly about what happened, I have spent years blaming myself and analysing events, trying to work out how it happened and what I could have done differently.

But here’s the thing: I did not consent and just to make it really clear, my underwear did not consent on my behalf. When I was at university, someone said to me that I needed to consider how my behaviour and actions and what I was wearing will have encouraged him. That broke me and it was confirmation of everything that I had tormented myself with. However, I’m now at a point whereby I can recognise that my clothing did not play a part in what happened, I was wearing jeans and a jumper and even if I had been wearing a short skirt or a top showing my cleavage, that would not have been consent either.

Likewise, I know that my behaviour did nothing to encourage him. But again, had I been performing a strip tease and then changed my mind and firmly said “no” my behaviour still wouldn’t be consent.

I was not drunk. I had not been taking drugs. I was stone cold sober, fully aware of my surroundings and I was not wearing a thong. Using the argument that someone is wearing a thong and is therefore consenting completely bypasses the fact that you can’t see a person’s underwear until their clothing has been removed.

Some people would like to think sexual assault is just a result of miscommunication, especially if the victim has some tie to the perpetrator and believe the perpetrator to be incapable of doing such a thing. Let’s put it very simply: unless a person clearly says “yes” to any form of sexual contact then you can’t assume and go ahead with sexual acts.

Likewise, asking a person if they were under the influence of alcohol doesn’t then mean that the assault was justified. By asking if someone was drunk, you’re asking if they were openly making themselves more vulnerable and therefore “asking for it.”

Anyone who has experienced a sexual assault knows how damaging victim blaming can be. Being asked what you were wearing or how you were behaving or even worse, why you didn’t fight back is so harmful. Only last month, women in London were being warned not to wear headphones or use mobile phones because of a number of sexual assaults. Yes, you need to be aware of your personal safety, regardless of gender and sexuality, but the only people who are responsible for sexual assaults are the perpetrators. Headphones don’t rape women, nor do their outfits or undwear or dark streets or clubs or alcohol and drugs or parties.

Don’t get me wrong, the people are carry out sexual assaults are in a minority and it is not a case of all men are bad. Women can also be perpetrators but we don’t see men being warned against wearing headphones. The reason that rape culture remains such as issues in the 21st century is because rape is still prevalent and sexual violence is normalised and excused in the media and popular culture: a women’s underwear being used as evidence in court is a perfect example of this. Women’s rights and safety are being disregarded by the very people who are meant to protect.

Women’s rights are human rights, and the blame has got to be shifted from women who suffer sexualised violence  or assaults to men who inflict it upon them. People are told that they wouldn’t have been attacked on the street if they weren’t walking alone, almost as if it was an inevitable event. That isn’t okay.

In the years since I was sexually assaulted, I have swung from blaming myself to being able to acknowledge that it was not my fault and then back again. Sometimes I feel utterly repulsed by myself, other times I feel repulsed by him. I’ve spent years in counselling and therapy, trying to come to terms with what happened. I can talk about the facts, but not the emotional side of events. But the thing is: I did not say yes and fundamentally, that was not respected.

The death of my dad: twenty five years on

This week marks twenty five years since the death of my dad. It’s a bit of an odd time of year, if I’m honest, because my dad died two days before my first birthday so going from two extreme moods in such a short space of time always messes with my head a bit.

Something I’m asked quite often is if i miss my dad. It’s a hard question to answer because it’s difficult to miss something or someone you don’t know. I don’t have any memories of my dad, although we is talked about openly by family and friends. At times, I miss the idea of having a dad and I miss the idea of having a more conventional childhood. But realistically, the conventional childhood of two parents and 2.4 children is becoming less common and “normal”.

As a child, I can remember times when I was embarrassed by the fact that my dad wasn’t alive. That might sound odd, I think it was linked to not wanting people to feel sorry for me. When I was in year three, my class teacher asked me, in front of the whole class, why my mum had only put down for one ticket for an event at school. I didn’t have the confidence to say in front of everyone that it wasn’t a mistake, it was just my mum and I and, actually, my dad was dead. That was my normal, but so very abnormal to other people.

By the time I reached my teenage years, I became more comfortable in telling people that my dad was dead. I met other people who had experienced bereavement and I didn’t feel as isolated. As my understanding grew, so did my outspokenness. One of my biggest frustrations is being lumped under the single parent umbrella. My mum did not choose to raise mess a single parent: when you have a child with a person that you love, you don’t envisage that it will result in raising the child alone, be that as a result of divorce or separation or death of a parent. I am from a single parent family, as are many of my friends, for various reasons. I defied the statistics and wasn’t suspended from school (the opposite, I went through school without ever getting a detention), I completed my a-levels, I didn’t and still don’t have a criminal record and I was not a teen parent. I valued my education.

When you lose a parent, it’s the big milestones that can really test me. The big birthdays, the achievements, the weddings and the thought of potentially having children, in future, and them not knowing their grandfather. However, as time goes on, I’m able to see them as a chance to remember and celebrate their part in my life rather than simply suffering through these events all the time. I’ve also learnt that not everyone will get it. Please, don’t bitch about your parents in front of me, unless you have extenuating circumstances. I’ll never forgot, at the age of ten, one of my peers told me that I was lucky that my dad was dead, because it meant that it was one less parent I’d have to convince if I wanted something. Sure, I’m really lucky. Get some perspective on how truly fleeting life is. This is a club that I never wanted to join and yet I can’t revoke my membership.

Having lost my dad at such a young age, I get very anxious at the thought of losing my mum. Obviously I’m not stupid, no one is going to life forever but the thought of her dying makes me want to physically throw up. For my whole life, it’s been my mum and I, battling against the odds and ridings and ups and downs and the thought of facing life alone or without her really scares me. When I was a child, I used to panic beyond belief whenever my mum was ill, even if it was just a cold. It puts me in a situation completely out of my control and I hate that.

Life does go on, but there will be times even all these years later, I will still break down like it happened yesterday. When those moments happen, I’m not sure why I’m breaking down, because I don’t know any different. This is my reality.

 

 

Universal Credit Saga – Part Seven

It’s been a while since I had anything to say about universal credit. Mostly this is because I haven’t felt well enough to battle the broken system and for the most part, it hadn’t been causing me any issues, personally, so my feelings and views on it have been forced to take a back seat.

That was, until this past month. I check my bank account regularly because I don’t trust the benefits system to continuously pay me without any issues. When I checked my bank account a few weeks ago, I realised that I wasn’t paid my last universal credit payment, meaning that I was very overdrawn. It’s been an expensive few weeks with birthdays and various other things so my outgoings were higher than normal but that still didn’t explain how I was so massively overdrawn.

I’ve always been very careful with my money and budgeting was a skill that was instilled into me as a teenager. Finding out that I was overdrawn caused a whole new level of anxiety but I pulled myself together and went to the job centre to ask where the hell my money was at.

If you’ve been a regular follower of the universal credit sage, you’ll know that my experiences at the job centre have been less than positive: I’d like to say that this time things were different but that was not the case. I explained, very calmly, to the work coach that my payment hadn’t gone in and as a result, I was overdrawn. I kid you not, the work coach shrugged in reply and told me that “these things happen”. There have been admin issues over the past few weeks, which has meant that not all payments have gone out on time. Admin errors happen, what I am more frustrated about has been the sheer lack of communication, so I had no idea that this was the case.

I told the work coach, again, that I was overdrawn as a result of the payment not going on and was told that I would benefit from seeking advice from the Money Advice Service. The Money Advice Service is an organisation established with cross Government party support, that provides free and impartial advice on money and financial decisions to people in the United Kingdom. It is a really useful service, but not a service that I require at this time, because when my payments go in, I am very able at managing my own money. It’s very hard, however, to manage you’re money when you’re not receiving the money in the first place.

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I thought that things were taking a more positive turn when the work coach asked me if I needed vouchers so that I could access the food bank. The situation that I’m in means that actually, I don’t need them, because I eat very little due to gastroparesis, and the supplement drinks that I have are on prescription. This is where it gets interesting: the average person will spend between £15 and £20 per week on food shopping. The job centre were offering me a £5 voucher, to last me a month. That is not enough to cover even the very basic amounts of food that I am able to eat.

 

This left me in a somewhat desperate situation. By the time I got home, I was in tears because of anxiety and felt pretty ill, in general. With my mum’s help, the situation was de-escalated and we agreed that she would lend me some money to help me until my next payment date.

The end result has been that I had a double payment on my most recent payment date, so financially, I’m back to where I should be.

Universal Credit makes people vulnerable. You’re constantly at the mercy of an admin system that may or may not work. And when it doesn’t work, things can go really wrong. People can so easily end up in rent arrears, which can put their housing at risk. Mortgage repayments can be missed. Bills don’t get paid. So many people expected that Universal Credit would be a Universal Failure, however the scale of the failure really is shocking. It has cost four times as much to run per person as predict, at approximately £700 per claim. A fifth of claimants’ payments have been delayed and it is pushing unsustainable burdens onto local authorities to pick up the pieces when it does go wrong. Food banks, churches and charities are having to support increasing numbers of people, yet despite all of this, we are told that we are too far along with the process now, for it to be reversed. Universal credit hasn’t been rolled out across the whole country yet, so all these failures are set to increase further by 2023, when the rollout is set to be completed.

All these reasons are why I want to be working and not living off the state. Ten months on from the start of my experiences with universal credit and I still feel like a failure.

 

 

We’re All Winners and Losers

Being diagnosed with a health condition, be that short term or long term, can make you re-evaluate your life and what you value as important. If you had asked twenty year old me, before diagnosis, I would have told you that my priorities focused around education, work and being self reliant. At that age, I was just starting my PGCE degree in primary education and I was very much striving to be an outstanding teacher. And I was, but as I became more unwell, being an outstanding teacher was coming at the cost of me constantly fighting infections, being really unhappy and stressed, not having a life outside of university and placements. But ultimately I was left feeling like my best would never be good enough, because my best was slipping because of my health.

After six gruelling months of teaching training, I made the decision to leave my PGCE degree, to focus on my health. At the time, it was a tough decision to make and it came down to how unhappy I was, more than considering my health, but as the months after university progressed, it became more and more apparent that my health wasn’t stable enough to cope with the demands that teaching expects of you. I still miss the idea of teaching, since I can remember, I had wanted to be a teacher so I felt very lost in a world where I was directionless.

Fast-forward a few years and whilst I might miss the idea of teaching, I am so glad that I stopped training before I was forced to stop. Since then, I have left another job because of the demands on my health, much of it due to working shifts and not being able to form a decent routine or get enough sleep. I thought that having official diagnoses would mean that managerial staff would be more understanding over my physical limitations, as well as the other odd things that my body can do as a result of EDS and its friends. I was perhaps naive in that thought: having a piece of paper stating that I have EDS doesn’t automatically ensure that people understand life with a chronic illness, more so when it is invisible.

Earlier in the year, I talked about being offered a job in children’s social services, in the early intervention team. It was my dream job and something that I had been working towards since leaving university. I had to kiss goodbye to that job because of how unwell I’ve been and I’m not going to kid myself into thinking that one day I will be able to go into that line of work. I really do hope that one day I can return to work but realistically, it won’t be in early intervention work because my body won’t cope with the demands, hours and stresses from the job. It’s not just my own health or life that I have consider, I need to think about potential families I would be working with. They need continuity and that’t not something that I can offer.

Similar applies to my inner dream of working in the police force. For all the reasons that I’ve stated about, it’s not a practical line of work and let’s be honest, I wouldn’t even get close to passing the medical tests.

I now spend my days writing, reading, sleeping and sometimes I go a bit wild and sit in the garden. I have to plan my life around when I have medical appointments to try and ensure that I’m as well as possible to attend them, but chronic illness is unpredictable so even the best laid plans go wrong when it comes to attending appointments. I speak to friends every day. But I still feeling lonely, even though I’m not alone.

I’m probably making life with chronic illnesses a bit shit and yes, at times, it is. But there are positives, even if they aren’t glaringly obvious.

I’ve met some really wonderful people who also have chronic illnesses. We are an odd bunch; we don’t do the conventional things like go to the pub or go shopping all day. You’ll probably find us in pyjamas, watching rubbish TV or having a group nap. But that kind of support is invaluable, as is the understanding. We are unshakeable, nothing is too gross to talk about and we can symptom share without sounding like we are losing the plot. Our medical knowledge is extensive: why ring 111 when you can consult a spoonie friend?

I’ve also developed a new gratitude for the days when I’m well enough to do something. Planning things takes a lot more effort and energy. Days when I can spontaneously leave the house and few and far between but when I am able to, it feels amazing and it leaves me feeling like a normal twenty something woman again.

Younger me imagined that I would be a teacher and whilst that hasn’t happened, I do feel happy being able to dedicate more time to writing and raising awareness about chronic illnesses. I’ve been given opportunities to write articles for charities or other blogging platforms and was recently nominated for two WEGO Health Awards, for best in show: blogging and rookie of the year. You can find out more and vote for me here.

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I’m getting opportunities which I would not be able to follow up on, if I was working, which is exciting and nerve-wracking at the same time.

That doesn’t take away the uncertainty or the fact that some days are just shit, but I find it is so important to try and focus on the things which are positive and make life easier to contend with. Health anxiety isn’t ever going to go away, scanxiety isn’t ever going to not be there and as much as I wish for it, I’m not never going to be 100% healthy and stable. I can’t go on week long benders but I’m a pro at watching a whole box set in a day. It’s the little things that make up life.

Guest Post: Gracie’s Gladiators

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This month’s guest post is written by Nattie. Nattie lives in the Midlands with her husband and two children, Grace and Amelie and her family is the perfect example of the wonder of blended families. Nattie works in with a PR company, specialising in event management. Life for Nattie’s family was turned upside down a few months ago, following Gracie being diagnosed with leukaemia.

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What can I say about Gracie? She’s 10 years old, absolutely gorgeous, funny, kind, intelligent, an animal lover, a fantastic big sister and a lover of hugs and cuddles. Gracie is also a cancer patient.

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Grace at the age of seven, blowing out candles.

Earlier this year, Grace was diagnosed with leukaemia. She had been poorly off and on since the winter and we, along with doctors, thought that it was a lingering viral infection. She was very tired, often coming home from school and falling asleep on the sofa until tea time. On top of this, she was also having a difficult time at school with friendships and she is starting to get anxious about moving to high school in September 2019. Nothing major but Gracie is sensitive and we know from past experiences that she doesn’t deal well with conflict or change, it emotionally drains her.

We were’t too worried. That is until her energy levels dropped further. Her teacher rang us to raise concerns: Grace was falling asleep in school and she wasn’t managing to take part in PE lessons, a lesson that she loved. In general, she was very wobbly and her balance was getting worse. She was sad, something very unlike Grace.

When Grace contracted her fifth cold since January, we felt that enough was enough: our previously healthy little girl was struggling and our instincts knew that something else was going on. We decided to keep her off school for a week. On day three of Grace’s week off school, she had a nose bleed, which would not stop. After the 15 minute marker, I ended up calling paramedics. Gracie was dizzy and faint and as the nose bleed continued, the colour was literally draining out of her. Deep down, I think I knew that I wasn’t calling paramedics just for a nose bleed, there was something bigger going on here.

This view was echoed by the paramedics, who told me, very kindly, that they felt that Grace needed to be in hospital now. Upon arriving, Grace had numerous blood tests and her obs and sats caused the doctors some concern.

After what can only be described as the longest wait I’ve ever endured, a paediatrition told me that I might want to consider calling my husband. I explained that he was due to pick up my younger daughter from school but would be here later. My world shattered a bit when I was told that David needed to be here now. Gracie was also asking for her daddy, in between sleeping and being confused. I rang David and told him to get to the hospital right now and then called on my fantastic friend, Essie, to ask her to collect Amelie from school and look after her until I knew more.

David arrived at the hospital and we were taken into a private room. This was the point where we were told that our beautiful little girl had cancer.

The prognosis was “good” we were told. If a child is going to get cancer, the cancer that Grace was suspected of having was the most easily treated, with high chances of going into remission.

In the space of a day, our lives went from talking about phonics and the girls’ homework, arguing over who was going to clean the guinea pig’s cages, telling the girls to eat their carrots, CBBC programmes and ballet classes to talking about chemotherapy, Hickman lines, Picc lines, steroids, bone marrow, blood transfusions and side effects.

Grace was very muddled when we told her. She understood that she was extremely poorly and would need to stay in hospital to get better. The extreme nature of her treatment plan was lost on her and we made the choice to only tell her what was completely necessary. She asked if her hair would fall out and we told her that it probably would. Grace new about the Little Princess Trust, thanks to Laura cutting her long locks a few years ago and she decided that she wanted to shave her hair ASAP and donate it. Her next question broke us, she asked in a tiny voice if she was going to die.

A ten year old child should not be having to think about their own mortality. David and I explained that all of the doctors and nurses were going to do everything possible to make her better and all she had to think about was fighting as hard as she could.

In the weeks since Grace’s diagnosis, she has had six blood transfusions and two platelet transfusions. She’s had three lots of bone marrow taken, four general anaesthetics, one of which was to place a line into her chest. She’s had more blood tests than I can count. She’s had different sorts of chemo, including having it injected into her spine, which made her very unwell. She’s been on steroids and is on a cocktail of medicines to try and fight this beast. She’s spent time in ICU  with suspected sepsis and has been so so sick. She has spent most of her time in hospital, only having half days at home here and there.

Side effects have included sickness and fevers. Her month and throat have been covered in large ulcers, making eating almost impossible. Grace has had headaches which have made her scream with pain. The combination of treatment and being bed bound has caused serious muscle wastage so now our once energetic and sporty little girl is confined to a wheelchair, on the rare occasions when she manages to get out of bed. The steroids made her angry and emotional, on top of making her sleep deprived and exhausted.

Then there was the hair loss. Nothing prepared us for that, even though we knew it would happen and had talked about it. Grace dealt with it better than us, simply rolling up the hair which had come out during the night and then saying “I think we should shave it because I don’t need my hair right now.” So that’s what we did. Grace has been rocking hats since then.

Amelie is struggling. At the age of seven, it’s a huge change to get used to and due to infection risk, she’s only been able to see Grace a handful of times. Our friends and family have been taking turns to move into the house, to look after Ame, to try and maintain some normality.

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Grace’s hair, ready to be sent off to The Little Princess Trust. Bye bye blonde locks. 

Ame and Grace’s school have been wonderful, fundraising to help us out as a family. Grace’s class write a letter to Grace every week to talk about what they’ve been doing. Even though she’s not at school at the moment, they still want her to feel included. Ame’s teacher, along with teaching assistants are giving her 1-2-1 time every day, to give her the time and space to talk. The nurses at the children’s hospital, where Grace is being treated, are also helping us to support Amelie and are helping her to understand what is happening to her big sister.

I’ll be honest, my reason for writing this is to ask for help. If you can give blood, please give blood. It takes less than an hour and will literally save a life. Prior to Grace becoming ill, I hadn’t ever stopped and considered how important blood donation is. The simple fact is, Grace would not be alive right now if it wasn’t for the wonderful people how have already donated blood and I wish that I could thank every one in person for saving my little girl’s life.

If you can’t donate blood, please consider donating to Rainbow Trust or the Children’s Cancer and Leukaemia Group – two charities which have hugely helped our family.

As a family, we are scared right now. It physically hurts seeing Grace so unwell and it hurts seeing Amelie so sad and confused about what’s happening to her sister. Forcing your child to go through procedures which you know are going to cause pain goes against everything you believe in, as a mother. But the alternative is so much worse. I hate seeing Grace in pain and scared. I hate hearing her cries but I hope that one day, she will understand that it was all necessary to make her better. We know that we have a long journey ahead of us but our unconventional little family will only get stronger during this fight. We are Gracie’s Gladiators and we will not give up the fight.