Quagmire\The Hamptons

Quagmire. Best word to describe how I feel about life right now. I have so much stuff to sort and fix but I’m swimming against the tide.

My reserve tanks are all out, I’m running on fumes. I know there are people in power people who could help but I am weak. I am not confident nor do I have the energy to front it. I’ve been fronting my whole life. I just need help. When I ask for it.

I got my independents back but was met with some issues. The summer months were ok but then winter hits and bam! I’m in the quicksand. I am not a victim and I do not like sounding victimised but when I re read my words I see that I am. I am being victimised, I am not being treated with care and dignity. My rights are not being met. Yes I understand that everyone is over worked and underpaid so I stay quite and take their feeble excuses. Who is understanding me and my struggle?

I live on an estate built by St James, my flat is owned by Thames Valley Housing Association.

I moved here in 2008, second floor 2 bedroom flat. My forever home. Even when my family grew, we made it work in my forever home. I never wanted to move.

I never wanted cancer either. I didn’t want my life torn apart, sliced and diced in more then metaphoric ways. I never asked to be disabled, I never asked to feel half alive. A failure as a mother and a wife. I never asked to be a burden on my family friends and neighbours but here we are.

Things I have asked for, a speed hump to be removed so I can exit my estate the quickest and simplest way.

No matter who I ask or what I ask its never simple.

If I don’t do what is asked of me I die. Thats how high my responsibilities are. I do what is required so I can do my job as a mother. I don’t get the luxury my housing officer gets. But he is overworked and underpaid.

Not my problem though is it. I am my own problem I need to do my best.

In September this year I watched a block of flat twice the size of mine burn down in 6 minutes. Thankfully everyone got out. This has lead to fire safety being checked on the rest of the estate. Its frightening to live here. At a residents meeting there was talk of a list of vulnerable residents. I put my hand up to ask how you got on that list. They said if you are disabled or seriously ill. I tick both boxes. A man named Howard Dawson (who has over 25 years experience in social housing) pulled me to one side and apologised he hadn’t been informed. My housing officer Colin Wilson knows my vulnerabilities, he has seen my doctors letters knows I am registered disabled and also knows I can not exit the estate the quickest and easiest way because I’ve been asking since January about a speed bump that restricts me. Able bodied people are fine. He has not thought to put me on the list.

I do not feel seen. I do not feel heard. I am scared.

The people I have encountered since being diagnosed at Thames Valley and Sutton Council are rude and unhelpful.

I want to be the best Mum I can be so I need to be the happiest Mum I can be but right now I’m trapped. I am trapped in a world of pain and restrictions. I am trapped in my depression and anxiety. I am trapped in this flat because no one will help me.

I am not ashamed to say I am scared.

BCAM

Breast Cancer Awareness Month.

Knowing the difference between an awareness campaign and fund raising campaign is very important. Its something I wish I knew sooner.

The thing that shocked me the most was how lonely I felt. How empty I felt. Cancer was destroying so much more then my body. Just like the rouge cells turn and mutate the good cells it was doing the same to my soul. I was a roaring fire now I’m barely more then a spark. I didn’t understand how a pink ribbon could make any of that feel better.

I was ignorant.

I don’t live in a world that I have to hide my illness. I don’t feel shame. I am lucky.

With awareness comes solidarity.

When the body is under attack it starts shutting down. Some weird self preservation mode. The same thing happens to your mind. You shut down.

I ignored symptoms. I allowed fear to cloud my better judgment. I allowed fear to consume me.

Now when I see the Pink Ribbon I don’t feel as lonely. I feel all the people lost before me and all the people thriving and living cancer free lives. I finally see the intent and it feels good.

The Pink Ribbon was never meant to reflect how cancer feels, its a white dove, a remembrance flag, a salute, a hello. It’s everyone effected by Breast Cancer secured in a never ending loop.

Words.

My words are my truth, they are like a portal. They take me places. They let me build or destroy.

I have always spoken words. I haven’t always spoken my truth.

The endless conversation I have with myself, sometimes I float and sometimes I drown.

Self forgiveness. 2 words I had spoken but not spoken as my truth.

Respect. Another word I speak and bestow on others. Silencing my truth. I now respect myself.

Throughout my life knowing how powerful words are I censored my own. With my words I protected what I loved.

With no self worth or self love I spoke for everyone. I championed your truth. I spoke kindly to you. I gave all my words of love away like party favours.

BANG! The metaphorical bus hit me.

My words were empty. I was shouting so loud I couldn’t hear myself. Demanding goodness for others but taking none for myself.

My words they never left me. My conversation with myself never stopped and with the worst words ever to be said lead me here.

To these words.

(I would like dedicate this to my friend Remi. The first person to call me a writer. I love you girl)

Breast Cancer Now

I have always been opinionated. I’m passionate and fiery. I speak freely everyday but today I was heard.

Em and I had a meeting at The Breast Cancer Now offices. We didn’t know what to expect. I think it’s fair to say defences were up. We were greeted like old friends and had an open frank and honest conversation about the Fashion Targets Breast Campaign and why it invoked such a reaction from us. Mistakes are made in life, no one is exempt. Moving forward and learning is the only way to make it better.

In the past 10 years alone Cancer treatments have got so advanced but sadly this information isn’t shared. People don’t understand the difference between primary and secondary or even how to talk openly about it. I feel Breast cancer is seen as 3 steps. Diagnosis, chemo then live or die. Somewhere along the line communication was lost. Cheesy campaigns were put over fact and figures. This miscommunication is what lead to my anger. The power of celebrity is undeniable and valued but so are the stories of the people living with cancer. I believe moving forward we will achieve the right balance.

We made it clear that we have no intention of being poster girls for breast cancer. Cancer is something we have. It does not have us. Instead we would like to be the opening act. The conversation starters. Behind the scenes making sure people have a voice and everyone feels valid. The ignorance around cancer is rife. A lot of us end up feeling like frauds because we don’t look how the media/tv portrays cancer patients. My own friends don’t fully understand what I go through. They see a happy smiling me and wonder why my dear friend Hayley still does the school run. If only they knew. If only the information was out there.

Only positive things can come out of today. I appreciate endlessly the kindness and support from Breast Cancer Now, especially Delyth Morgan. She could have left this up to PR to sort out but she has personally gone out of her way to make it right. I am excited to see what is to come.

Breast Cancer Now fund a third of cancer research in this country. A fact I never knew. A fact I am humbled to learn and a fact I will treasure.

I look forward to supporting the Wear It Pink campaign and sharing its importance.

That Picture.

Why was I so angry? I keep asking myself that. It wasn’t just the campaign. It runs deeper.

A deep inferior epigastric artery perforator, or DIEP,flap, is a type of breast reconstruction procedure that a woman can have after a mastectomy or removal of her breast due to breast cancer. The term “flap” means that a surgeon takes healthy tissue from another area of a woman’s body for use in reconstruction.

I ignored my symptoms. I ignored a 20cm lump. I ignored a change in the texture of my skin. I ignored my bright red burning hot breast. It was only when my nipple started to invert I went to my doctor. I ignored it and hoped it would resolve its self. The chances of me having cancer were so low I ignored it. I had every excuse for it not to be cancer. A day turns into a week, a week quickly turns into a month. It was bound to be nothing.

I have in the past brought Breast Cancer awareness products. My wellies were covered in little pink ribbons. I had pyjamas, a key ring and gave regularly to Breast Cancer charities. Whilst I do believe in the power of celebrity in raising money. That is proven. I don’t believe in celebrity telling our stories.

Cancer treatment has come such a long way in the last 10 years but the language and awareness campaigns are dated. We also have a frontline of super humans willing and wanting to tell their stories. A z lister from TOWIE getting her tits on live tv isn’t brave. That is not an inspirational act. Tag lines like 2 is better 1 should never have been used. I’m not saying that campaigns have to include doom and gloom but it should represent class dignity and strength.

I would like awareness and research into secondaries brought forward. I want people to understand the long term effects cancer treatments do to our bodies. I want people to not feel alone or feel they cant share their feelings because of how the media portrays cancer.

I want to shine a light on the mental health side of cancer and its treatments. I want to talk about PTSD. How To speak to your children. Maybe if people were more informed of the whole story awareness campaigns would be more inclusive.

When will it get better?

I have been looking after children my whole adult life. I was the kid that begged to look after the babies.

I have amazing relationships with my friends children because thats where I am most confident, looking after children.

I didn’t have first Mum nerves with Mia, I knew how to hold, change, bath a baby. What medicine to give, what nappies to use! i could sterilise, make bottles wash clean and cook all with a baby on my hip. I watched my Mum and it was second nature.

I have always been able to look after children. Its my thing.

Yesterday in Bluewater I lost Effy. She ran away from me and I couldn’t keep up. An emotional bus of failure embarrassment anger and fear hit me. I cannot look after my own baby outside of this flat. I can’t trust my body to help her if was injured or taken. I am so broken. Mentally and physically.

I have a mobility scooter and was really looking forward to taking her to the park or surprising my Boy at school pick up. I wanted and needed my independence back.

My inability to look after Effy is a danger to her. Out of everything I have gone through since being diagnosed this is by far the cruelest and most painful part. Looking after kids is what I do. It’s who I am, as a mother and a friend.

Today is not a good day.

Ice Creams for breakfast.

Down Days

I am in a dip. I found out a few weeks ago someone I once knew died of cancer. I am angry. Another child is motherless because of this awful disease. Another Husband goes to bed alone.

Cancer wins again. I am so angry.

I feel like I’m stuck in a box and I’m running out of air. I am trapped in a world of pain. I feel out of place in my own life. I don’t seem to fit anywhere. I lie awake at night my anxiety has me by the throat.

I am beginning to dislike myself. I do not like the dark transformation of my heart. I’m filling with bitterness and envy. I’m caught in the thought ‘it’s ok for them because……

Thats not me. Thats never been me. But I am angry and its consuming. I cant forgive cancer. I cant move on. I cant do anything but drown in my own anger. I am allowing myself to feel inadequate. I am choosing not to believe in myself. I am letting peoples choices effect my self worth.

When I started writing I was full of hope and inspiration. Now i’m conscious about sounding boring. How ridiculous is that. The Cancer community has really changed this pass year. All of a sudden my cancer isn’t good enough. I am not good enough. I cant beat this. My story doesn’t get a happy ending.

I’m just a Mum struggling with life like so many others. I don’t have the answers, I can’t run marathons I am not a spokes person for Breast Cancer. All I wanted was to leave enough of me so when I go my kids don’t forget me. I want Effy to feel like she knows me. I didn’t expect to feel like this.

I don’t want to be angry.

My Thoughts….

It truly is a dog eat world. At least it promotes ambition.

Its a truly unfair would. At least it promotes hope.

From where I sit I see justifications and sadness come from those with empathy in abundance. Hearts so filled.

Also from where I sit I see entitlement and inflated egos.

Social Media is a strange place.

King Midas is alive. No lesson learnt. Poor King Midas and his self proclaimed curse. Theres a good moral in that story.

Wanting more for your self is drive. Wanting more then others is greed.

Icarus got his flying shoes but was waned not to get to close to the sun. He thought he knew best. He didn’t listen. Poor old Icarus.

These stories have been around forever but people still do not take heed.

Money doesn’t equate respect or love.

Boundaries are essential.

Only Rocket Science is Rocket Science.

Children have infinite power and possibility.

Human nature is confused with a self inflated sense of human nurture.

Egotistical needs to be needed but not giving the tools to be independent.

Mothers love or Mothers control.

Ignorance confused for hatred, passion confused with anger. Everybody wants to be right but not listening to see if anyone actually is.

We have the right to speak but also the right not to listen.

Balance is the silence of one to hear the other.

Education is dangerous. Inquisitive minds are dangerous.

Trigger (un)Happy

Dictionary result for oestrogen

/ˈiːstrədʒ(ə)n,ˈɛstrədʒ(ə)n/noun

  1. any of a group of steroid hormones which promote the development and maintenance of female characteristics of the body.

Take that away and what am I?

Thats what I am struggling with. I cant have any hormone replacement treatments. My body is starved of the thing designed to keep it up and running. Like a binding agent, without it you just fall apart. There is no choice or options or time. After a year of treatment by body was shocked into a menopausal state. The menopause wasn’t designed for a Mum with young children.

The best way to describe how I feel is I have been given a destination but no directions to get there. I’m just floating in a big ocean waiting to see land. I cant die and I cant live. I’m just floating in an abyss. Im helpless and hopeless.

I believe in order to not have something means there is a choice to have it. If I can be hopeless then surely I can have hope?

Choices. I can choose to float waiting for land to hit me or I can choose to swim and find my own land. Its not the easy option, it will take time and it will be exhausting. I will be petrified. I can’t bring the oestrogen back. That is not a choice. I need to find another binding agent.

I feel so limited in what I can do. I can’t walk very far, this is becoming more and more of an issue. I have to be taken everywhere, we plan everything around 4 hour medicine blocks.

I am working on feeling limitless. I’m working on becoming independent again. I chose hope over hopeless. I want to be helpful not helpless. I have a life I love and friends I love (and miss). I have dog walks for them to push my wheelchair on.

Amy, Hayley, Lolsy, Mango, Brown, Tucks and me.
(yet to decide who will be chief Wheelchair pusher)

There are no over night solutions. No miracle cures. Just choices. If you can feel hopeless you can feel hope.

I cant replace the oestrogen, I cant stop the physical effects it brings. I have a good relationship with my Doctors and I am not afraid to ask for help.