5 years chemo FREE!

 Well I don’t really know where to begin. Or that today is today. It’s mad. It’s unbelievable. It was just a dream. That at times felt so unachievable. But. I’ve done it. It’s here. 5 years chemo free. Today. 

And it almost feels surreal. To think of the person I was. The half life I had. Compared to today. And how different it all is. 

Life is so different now. Well for a start I have one. I’m not controlled by debilitating chronic fatigue. I’m not controlled by my leukaemic rate and the need to be on treatment. And that person seems to blurry. 

Part of me thinks I should start a new blog. Looking back there is so much despair. Heart break. Upset. A crushing loss of hope. Wondering if I will ever truly be me. 

And now I am. And it’s not that I want to re-write history. It change it. Or make it seem better than it was. It was awful. But I no longer fear of going back to that person as I used to. 

I also have to acknowledge that things are good with my miracle (no longer a baby) baby’ father. (Who is now 4 and starts school in September… UTTER MADNESS!!! Where the hell has that time gone?!?) Which makes everything better. 

But no longer worrying about what my next leukaemic rate result will be and the ‘reassurance’ from my consultant that ‘there’s a prescription waiting for you’ has stopped. Is well. It’s unbelievable. 

I asked her last week during my check up, which is still every 8 weeks even though it’s been 19 and a half years since my diagnosis and 5 years since I stopped treatment, about how many get to 5 years clear. And in my CML clinic where there are 250 patients there are only 3 of us who have made it to 5 years clear. And unlike every other CML

patient my body doesn’t do it the normal what. What a surprise?!? Lolz. 

I learnt that for everyone other than me, when the leukaemic rate starts to climb it normally continues until treatment has to be started again. But not me. Nope. The rate will rise a bit. Stabilise. Drop a bit. Stabilise. Rise a bit. Stabilise.  And so it continues. Which is why she used to say to

me that there is a prescription waiting. No one else’s immune system gets it under control when off treatment when the rate starts to rise. Other than me. 

And I really do believe that my immune system can do this because of my miracle baby girls stem cells in me. (And probably all the health stuff I do for me too). 

So whilst life isn’t what I thought it would

be right now. I will forever be grateful to her father that he was in my life. And that 5 years ago I had a feeling that things were about to change forever. And without telling anyone, I took myself off treatment just in case (as I knew the very long list of defects and damage the chemo I was on did to a developing baby). And that was the best decision I ever made. Because she was my future. She became my life. And she has kept me safe. And she is perfect. 

And I am so proud of me. And that overwhelmed 22 year old who asked her then consultant if coming off treatment was ever possible. And I was told it only happened to a few. And I decided there and then that I would be one of them. And yes, it took 14 years and every single treatment option available. Including 13 years of debilitating chronic fatigue. But I never gave up on that hope. And here I am. 5 years treatment free. My body managing remission. For a blood cancer, that on paper, I never should have been diagnosed with. 

18 months later (it isn’t. I can’t count)

18 months. Fuck that’s a long time. (My brain has engaged. And it’s been 7 months. What a fucking idiot. Glad I can still work out months and years!). So much has changed. So much is the same. I’m back in London. In the flat we moved to as a family. The flat I left with our child and dog. But coming back here was right. Even though another has been here. But this was never her home.

Cancer. Should probably mention that first. As that’s what this is meant to be about it. Well. Amazingly. I’m into my 5th year of being chemo free. 4 years and nearly 3 months of no chemo. And my latest result was a big drop compared to the one before. Which is epic. I’m on a very expensive supplement regime and I’m glad it’s helping!

I went to a Blood Cancer UK event a couple of weeks ago. And a friend was there with CML and they were tired. Needed to sit. And it threw me back to where I was for so many years. How restricted my life was. How I had to compromise every day on what I did because of my energy levels. 

And now. Well I don’t have to think. I don’t have to wonder how I will feel tonight. If I can stand. If I can talk. If I have the energy. Because I do. Yes. I am tired. But it’s different. It’s being a single mother to a very full on 3 and a half year old. From recovering from my relationship and dealing with her father. 

It’s hard. 

There’s so much to say. So much I can’t. I wish I could. The truth. All of it. Out in here. My therapy. My process. And I can’t. And I struggle with that. It eats me up. I feel dishonest. 

Ridiculous I know. Since leaving Twitter hardly anyone reads this. And that’s fine. I just want to be true. And I’m not. Because I can’t be. 

I’ve joined a dating app. I thought it would be easier in my 40s. So many have children. So many don’t drink. So many have baggage. 

And it’s still the same. Fucking horrific. Getting ghosted. I can’t be fucked with this. But I also don’t want to be on my own. I want a family. And now I don’t have a dog. Meeting new people is so hard. 

I haven’t written about Luna. My beautiful Luna pup. We had to put her down in April. She was 2. I think she had cancer. They were hoping it was (treatable) bowel disease. It wasn’t. She just got worse and worse. She told me the day it was time to go. I sat with her on the floor at the vets. Stroked her head. Spoke to her as she went. Told her how wonderful she was. How beautiful. How loved. 

And now I’m on my own. Truly on my own. And my heart breaks for me. For the next baby I so wanted. That as the days go on, drifts further away. 

I’m very sad tonight. My miracle baby is with her father. In that house. And I have so many things to say that I can’t. I don’t want her there. And I just have watch from the sidelines. 

So once again. Not very happy. There is happiness. So much joy. And a lot of processing. 

And to honour Luna who I still miss so much. A photo of her with this post. And the hope I can get myself together again financially so I can afford to buy a new dog.  I’m going to get another German Shepherd. So I just hope the universe does its thing. 

2024. What. A. Year

Well.  What a year.  Where to begin.  Of what was meant to be.  An exciting new start in London for my family.  Re-building my work.  A new job for him.  Our second baby.

And then.

 

Well.  It all went to shit.  The grief.  The heartbreak.  The heartache.  Of questioning what I did wrong.  Why wasn’t I good enough.  Why is another so much better than me. 

Apparently no one else was behind our split, I find that hard to swallow.  To believe.  That things said to me could be so suddenly turned off.  Reversed.  In weeks.  Without there being the pull of another.  

 

And it’s been so hard to process.  To not blame myself for it all.  How can another, other children, another dog, a 45 minute commute on the train from London be better than what we had.  Our child.  Our dog.  Our home.  Yes, not the nicest flat in the nicest part of London.  But being in London.  What we both wanted.  And within weeks all that had gone.

 

This wasn’t going to be a heartbreak vomit going over what’s already been said before.  Because I’m so much better than I was this time a year ago.  I was still reeling from it all.  Didn’t know there was already another.  Believed what I was told.

 

More fool me.  Especially knowing the history.

 

And yet.  I won’t go into things on here.  And I know everyone thinks I’m a fucking idiot.  However….. 

 

Time will tell.

 

I have a plan for 2025 and I’m going to be brave and write it down here and put it on the internet.  Because, well, that’s what I do.  

 

2024 has once again shown me I am surrounded by a great force of love.  From those I know in person, and from those whose pictures I know online.  The call to arms that happens when my life goes to shit is astounding.  And it’s happened this time from those I didn’t expect, which has made it even more impactful.

 

2024 has shown me how strong I am.  You do not fuck me with me, my child or my dog.  I will dig deep and stand firm in a way I never thought I would.  Or would have to.  I did not think in the year that I turned 40 that I would be where I am today.

 

2024 has shown me that I will put my magical baby girl before everything.  Regardless of the impact on me.  Every cell in my body is about keeping her happy, regardless of age or how adaptable she might be.

 

2024 has shown me that I will get out of bed every day.  Regardless.  I will smile.  Regardless.  

 

2024 has shown me that I also need to focus on my happy.  So I have decided to change direction with my work and really focus on mother and baby.  It’s why I have started training as a post-natal doula even when arguably, I should have spent the money on day to day living

 

2024 has not been the year I thought it was going to be.  I know I will look back and know it was all for the best.  

 

It was also the year that I started as a size 8 and ended it as a size 8 so that’s definitely a positive.

 

But back to my 2025 plan which I what I started to write about before going off on a massive tangent.

 

I will end it with a successful business rather than just scraping by.

I will end it with a family unit, whoever that will be with.

I will end it with baby number 2.

 

Because I have learnt that when I really put my mind to something it happens.

Part of my soul is missing

 I’ve been meaning to write for weeks. I have words, sentences circulating in my head. And when they are there they are so real. Vivid. Encompassing. And then they go. And I can’t find them again. 

Music. I can’t listen to it. Well. Not my music. It makes me feel sick. The memories. Us.  London. Monty. Suffolk. The good times. The bad. And even though the bad was awful. It was still mine. My time. Our time. 

And now I’ve been replaced. 

And I don’t dare turn on the radio. It blindsides me. Takes my breathe away. The devastation. 

And I can’t be sad in front of our baby girl. It upsets her. She doesn’t understand why. I can’t put her through that. 

I feel like a part of my soul is missing at the moment. Music is a part of me. And that part is now empty. 

So many words. So many I can’t write. It is my story. But it’s his too. And whilst I want to be truly honest about what’s happened. What’s happening. I can’t. Because it betrays trust. Not that he should have mine. Not any more. 

He’s moving. In with his new family. And the impact on me. On our daughter. Our dog. It’s huge. Things are going to get hard. My steely side is coming through. Having to make decisions I never thought I’d have to. Fighting battles I never thought would be mine. But I have to. I can’t not. 

But it means I’m moving back to London too. Back to ‘our home’. That became his. With her. Temporarily. When she stayed there. And I need to be fully ok with that when I move. Make it mine again. Which I will. 

But I feel broken. Not for him. For my family. The baby that was meant to be this year. That would have been arriving any minute now. Our plan. 

And then. He met her. 

And I’m grieving for that. Nearly 40. Not knowing how I’ll meet someone new. Always out and about with my child. No way to subtly say I’m single. 

And it’s overwhelming. 

Grief. Self Blame. What did I do wrong. Why wasn’t I enough. Why weren’t we enough. Why is someone else. Their children. Their dog. Enough. 

So I sit. In my parents garden. In the sunshine. With tears streaming down my face. Trying to comprehend. To understand. To truly know. This was for the best. This is what’s meant to be. This is not it. I will not be alone. There will be happiness. 

Because I’m exhausted from repeatedly picking myself up. 

Feeling like a failure

It ebbs and flows. Good days and then bad. And this week the bad seem to be dominating. I know it’s a process. Something that has to be worked through. 

But fuck it’s hard. 

Pressure for my baby girl to meet the new person. That’s a no. Absolutely not. Not for a long time. I have my reasons which are valid. But not to go into on here. Personal and private. But a mothers love is fierce and my drive to protect is absolute. There will be no wiggle room on this. No give. I will fight all the way. And win. And to be told it’s because I’m bitter hurts. I’m not bitter. I’m wounded. My heart is healing. To be told you are no longer loved when you still do, regardless of everything, is hard. Especially when you are looking after a toddler, a young dog and trying to get work back up and running. 

When you are exhausted. And your brain doesn’t work. And you feel like you are drowning in everything you haven’t achieved. 

No house. Garden. Garage. Conservatory. 

Not good enough. 

And a comment about the new one meeting all the children in the summer. That hurts. I was kept away. Always at arms length. At home looking after the dog when it wasn’t dog friendly. 

The dog walker. 

So fucking insulting. And yet I forgave. Time and time again. 

What a fucking idiot. 

And for him to want to include her in family things. Already?! It’s sent me spinning. 

When lockdown happened I suggested us living together so I could look after Monty whilst he was out doing volunteer stuff with a charity. But no. So to my parents I went. 

He’s talking about moving in with her. 

After 6 months. 

We were together, admittedly on and off, but essentially together for 2 and a bit years when lockdown happened. I only stopped being the dog walker when I was pregnant. Became official to his children. When I was pregnant with their sibling. 

And still. I want to know why I wasn’t good enough. To have my family together. To not feel like a failure. 

3 years chemo free

This should probably be a really joyful post. This weekend has marked 3 years since I came off chemo. But of course it’s all intertwined with him. 

3 years and 2 weeks ago I ended it. We were in such different places on such an important thing for me. And it was hard. Saying goodbye to the dog. My beautiful boy. Having all evidence of them both removed from my flat. Empty spaces everywhere. Memories everywhere. 

But carrying on. 

Then 13 days later. A phone call. I remember where I was standing when it rang in my hand. A video call. I remember where he was standing in his flat. What I said. ‘I’m at the parents. Come and stay. Escape London for a couple of days. Monty loves it here’. And a noise of agreement. So they came up. My boys. Who I thought my forever were. Well. Monty always will be. 

And 2 days later. Thinking. What if. Just in case. And I told no one. I stopped taking those pills. Just in case. 

And I was right. My future was going to change forever. My longed for miracle baby. Who has kept me safe for so long.

And this weekend. Unable to truly celebrate it. Health things going on with my father. Not wanting to overshadow what’s going on with him to celebrate what’s going on with me. Keeping it quiet. As I did when I stoped treatment. 

And trying to be really happy about it is hard. Because things aren’t where I want them to be. And I’m confused about certain things which I can’t talk about. I know it’s cryptic. Don’t want to be a girl over analysing everything. Which I know I do anyway. It’s how my brain works. A critical thinker. 

I wish I sometimes lived in a more of a bubble not really noticing what went on around me. 

Mixed messages. But are they. Is it just me wanting a certain outcome. Putting too much on nothing. Because of what I so desperately want. 

I don’t know. Time will tell. I’m on this path for a reason I know. I should let go and trust in it. 

Like I did when my baby girl happened. 

3 years chemo free. It’s huge. I couldn’t manage more than 6 weeks before she became my reality. 

But as I sit here in my parents conservatory. On the sofa where we sat. This weekend 3 years ago. So happy to be back together. My world complete again. It’s hard to be happy. 

C-Section Awareness Month

Well, it's another month no doubt made up by social media companies that I can jump on the bandwagon about.  And shout about.  Angrily.  What a surprise.  Me, angry about something? Noooo.  

Well I'm fucking furious about this one. Livid.  The words to truly explain how I feel about this don't exist.  I even wrote the below and sent it to the recent birth trauma inquiry in Parliament. How fucking ridiculous that there is an inquiry going on in an establishment that's meant to look after us; but day in day out interferes and meddles with birth to suit their timelines, and their policy made up on bullshit 'science' mainly stated by men over 100 years ago.  I shit you not.  And the trauma and the guilt are long-lasting and impacts on bond, breastfeeding and more which is also devastating.  And no, it's not ok to say 'well at least the the baby is safe'.  That's a fucking cop out to allow people to get away with what they are doing and to not deal with any of the consequences of their actions.  Also the mothers mental health is so important and if that gets trashed at birth, as mine did, it makes those first days and weeks which are meant to be magical, fucking awful.  Horrific. And no mother should go through that because of the ease of hospital staff.

I haven't really written about my, sorry, our, little magical girl.  Because once again a lot of it isn't my story to tell. It's hers.  It's why I basically never post photos of her, very rarely her face.  I don't want her to pull me up on it and be angry when she's older that I didn't protect her privacy by plastering her face all over social media.  For likes and follows. So I keep her fairly secret.  And when she's older, if she wants to put her life on social media, she can.  As it's her decision. And when I say older.  I mean older.  You know, maybe at 25. Lolz.

Anyways.  I was coerced into a c-section with the dead baby card played by an obstetrician as she was breech.  It terrified the shit out of my now ex who didn't understand why I didn't want a c-section and thought I was putting our baby at risk.  I'm informed.  I'm educated. I knew the risks.  But I was nearly 39 weeks pregnant feeling very vulnerable and alone. With no one in my corner.  It was horrific. The last 2 days of my pregnancy were ones of stress, arguing and wanting to leave.  And then my waters broke in front of my now ex.  So I could only do one thing.  Go to the hospital.

''Her birth was a complete car crash of everything I didn’t want to happen, happening.  All my requests were denied.  I suspect this was due to her being an ‘emergency c-section’ born at 12.51am on a Monday morning, so I got the graveyard weekend staff who clearly put all their wants before mine.  It was still ‘covidy’ so I had to wait on my own for a few hours until going up to theatre where I was allowed to be with my partner.  I think he had to wait in the car, so that’s also not great in terms of trauma for him.

 

I live with Chronic Myeloid Leukaemia and I had to wait for 14 years of chemotherapy to be in a place where I was safe to have a baby.  My consultant refers to her as ‘our miracle baby’ so my pregnancy and her birth were meant to be incredibly special. 

 

I found out she was breech at 38+4 due to developing high blood pressure and needing a growth scan, and I was refused a vaginal birth because of a lack of skillset of midwives and obstetricians who choose not to upskill to allow women to have the birth they want.  A breech baby is not a hazard or a danger, it’s a variation of normal that the modern medicalised birth system governed by outdated and often unfounded research which shapes policy, chooses not to recognise and instead puts mothers and their babies at risk.  

 

I had a failed ECV (trying to turn the baby) at 38+5 and my waters broke at 38+6 around 7.30pm.  We spent 3 hours at the hospital when I had my ECV and the only thing my partner heard from the conversation with the obstetrician was the dead baby card he played when I said I wanted a vaginal birth not a c-section.  C-sections are really damaging for mother and child and the rate at which they are used is shocking.  C-section babies are more prone to eczema, allergy and asthma because of how their microbiome is disrupted at birth. So I had no time to get into place anyone or anything to help assist me in what I wanted to happen.  

 

When being consented for the surgery I asked for a gentle c-section which was denied for no reason (I believe it’s because they take longer, and they wanted the surgery to be over and done with as soon as possible).  I also asked for delayed cord clamping which also didn’t happen.  Because my body wasn’t given the time it needed after the spinal block, (I believe because it was the middle of the night, and I was just another women being cut open that evening) I could feel pain when I shouldn’t have done.  I managed to hold out until my daughter was surgically removed from me and I then needed a general anesthetic.  

 

I didn’t have my golden hour or immediate skin to skin.  She didn’t get the cord blood that was hers because of the general anesthetic and needing to prevent her from getting any through the placenta. I was separated from her for between 2-4 hours after she was born, I can’t remember how long.  My breast milk was delayed because of all of this so I was put on a horrific and stressful feeding programme when she was 5 days old because of ‘too much weight loss’ even though c-section babies lose more weight as they are born with all the fluid in them that normally gets squeezed out during a vaginal birth.  I also don’t remember my first words to her or being given her.

 

Her birth, which was so special to me, was completely taken over by ‘health care professionals’ who were simply following their own agenda.  They didn’t care about me or what I wanted or what I was going through.  No doubt to them it was just another c-section to bill for and more money for them.

 

I cannot put into polite terms the negative impact this has had on me.  Also learning to be at peace with my body and the ‘pouch’ caused by the surgery.  I have body dysmorphia and the horror of having this for the rest of my life, a daily reminder of how my daughter came into the world and all that it shouldn’t have been but was.  It’s been so damaging mentally to me and has also had serious and negative consequences on my relationship.

 

It’s taken me 2 years to be able to talk about this without bursting into tears immediately.  For the guilt to lessen that I failed her. I wasn’t there when she was born.  She didn’t get a third of her bodies blood and stem cells that are in placental blood.  As someone living with a blood cancer, I really hope this doesn’t impact negatively on her future health.

 

I have officially complained to the hospital and got an apology back.  That everything that happened, shouldn’t have.  But if I can’t have any more children, nothing will truly get me over that night.  How the people who are meant to look after you when you are so vulnerable failed completely.  If I have another baby I will have it at home regardless of womb position.  I will not trust anyone in a hospital setting around birth because they do not care.''