Sarcoma be kidding me……

Sometimes, life just doesn’t work out as you had imagined it. When I was younger, I imagined falling in love, getting married, having a family and living happily ever after. But happily ever after quickly becomes a nightmare when you are thrown enough trauma for a small village to deal with.

Just when you think ‘yeah, I’m doing ok’ that funny thing called life checks in again to let you know you haven’t quite had your fill. I think I have seen the inside the majority of the hospitals in South Yorkshire. Most of them are pretty miserable to be fair and like in all walks of life, it depends largely on what staff you get as to what kind of experience you have.

From the age of 18 I had always had a lump on the palm of my right hand. It grew slightly larger, so I went to get it checked with my GP. She had a good prod at it and declared that it was a ganglion cyst and it would most likely go away on its own……fantastic……and thought no more about it.

In 2010 I fell pregnant with Sam. The lump, who I fondly nicknamed Geoff, was still taking up permanent residency but had started to grow and change shape. In the June after sam was born I went back to the GP who then referred me straight up to the hospital to see a surgeon.

At my initial consultation, the surgeon was vexed. He had never seen anything quite like the lump that I had presented to him. He asked me so many questions about it and covered every eventuality, but to no avail as my answer to everything he asked had been no. The lump had simply appeared out of nowhere and never got the memo to leave.
In fact he was so fascinated by it he rang through to medical imaging to have some photos taken of it before I left my appointment.
After my not so glamorous photo shoot, he said it would have to come out and booked me in for a pre op. He explained that as with any lump they remove they send them off for histology reports, just as a precaution. I totally agreed and left on my merry way.

After my pre op was done, I waited until I was given a slot for surgery, which came after two weeks when I was offered a cancellation. Which was great…..the week before my friends got married. It’d be alright surely, it was only a lump, the dressing will be tiny……….wrong!!

I was prepped for surgery in the day unit at Rotherham Hospital. The staff were lovely, I was cannulated, marked and consented and good to go. It was the first time I had ever been put under a general anaesthetic and I was absolutely terrified. I worried that I would still be awake when they were slicing my hand up or I just wouldn’t wake up at all. Neither of those things happened and I was fine……until I saw the bandage on my arm……seriously?What even was that?I looked like the offspring of the Michelin man. It was hideous and huge and the worst news was, that it had to stay on until after the wedding. We’ll see I smugly thought to myself, it definitely would not go with my dress.

I had Geoff exorcised the last week in July 2011. I had my six week check up in September. I sat with my surgeon who said that the op had gone well, the lump was rooted far deeper than they expected but were confident it had all been removed. He then went on to inform me that the histology reports had come back from their labs…..but they didn’t know what it was. So they were going to send it to a histology lab in Glasgow and they would see me back in another 2 weeks.

I never thought anything of it at the time.

When I attended that next appointment, I was again told that the labs in Glasgow weren’t sure what it was either, so as a last measure they were sending it to a specialist centre in Sheffield. He told me that there was a possibility, however very unlikely, that it could be a sarcoma. Now, having some medical background I knew anything ending in ‘oma’, generally isn’t that good. But he was very reassuring and told me that they didn’t think it was as it was a very unlikely site for those types of tumours……

With the word ‘tumour’ still rattling around in my head, I got an appointment through the post just a week later to be seen at Weston Park hospital by a professor there. I should have known there and then what my diagnosis was going to be.

The morning before my appointment, I knew my period was late, a test came up positive and I so wanted to be happy to be pregnant again. But with what was yet to come, I just couldn’t be. As it would turn out, this would be the baby I would lose 12 weeks later.
We arrived at the hospital early and I attempted to drink a coffee but couldn’t even sip it without feeling bile rising in my stomach. I felt so sick, a nauseating combination of pregnancy hormones and nerves. I felt awful.
I didn’t know what was coming, but I knew it wasn’t going to be good.

I don’t really like how the appointment system works at Weston park. You are separated into two rooms. The health professionals are in their office and you wait in an adjoining room until they’ve looked at your notes and are ready to grace you with their presence.
So I sat, in a very bare, clinical room, in silence, until the professor was ready to deliver his verdict.

“So Mrs Evans, why do you think you are here?’
“I had a lump removed from my hand, didn’t know what it was, and thought it could be cancer”
“Well that’s exactly why you are here, you have cancer”………….

You have got to be kidding me. As I watched his lips moving my initial instinct was to ask him if he was joking. How could I have cancer?I wasn’t ill, I felt fine. Id had this lump for years, surely they had made a mistake.

“You have a rare type of cancer called a sarcoma. There are only a few specialist centres in the UK and you are lucky enough to live near one of them. We want you to have a CT scan on your chest as soon as possible, an MRI and another skin margin done. We will take it from there with regards to chemo and radiotherapy” And off he flounced out of the room leaving me with the Macmillan nurse, who wasn’t satisfied until I had had a little cry and she’d given me a huge wad of leaflets. I don’t, as a rule, cry in front of people. I need information to process first.
When those kinds of words are being thrown around, they clearly hadn’t made a mistake and I’m not sure if lucky is the word I would have used to describe how I felt right at the moment in time.

When I got home, the enormity of what had just happened started to hit me. I read each leaflet back to back, over and over, I googled until my brain hurt. I didn’t love what I was reading. The more I read, the more terrified I became. Chemotherapy, radiotherapy, limb saving surgery…what if they had to remove my hand?my arm?
These types of tumours were invasive, they liked to spread, usually to the lungs. Lung cancer?This can’t be real. Recurrance was high and the survival rates were so low. What on earth had just happened to me? Id got an 8 month old baby and was pregnant again, what happened if I died? I couldn’t die, it wasn’t an option. Once the tears started they wouldn’t stop. My eyes were sore and this was a journey I didn’t want to be on. I wanted to get off the cancer train.

I would have to have my lungs scanned every 3 months to make sure there had been no spread. But I was pregnant. I couldn’t have the X-rays they wanted me to have, nor could I have the CT scans or the second skin margin done until after Id had the baby, which left the staff in a difficult position as they really needed to crack on with the next rounds of tests as that lump had been present for a long time. Only now it wasn’t just a lump. It was a malignancy.
I attended the Hallamshire for an MRI scan and only 2 weeks later, just before Christmas, I miscarried (seems to be a common theme for drama and christmas) So as soon as I let them know, the hospital implemented their full plan of action as soon as they could physically get me in to the appointments.

My second skin margin was done by the most amazing surgeon, Rosalyn Harper. She was based at the Northern general hospitals hand unit and she was fabulous. I had a consultation and she explained exactly what she needed to do and how she would do it. For anyone that knows me, they understand I don’t deal well with the unknown. I deal with facts and figures. She really helped ease this part of my anxiety. I wouldn’t be put under a general anaesthetic this time, I would have it done under a Brachial block. It was like having the worst dead arm for 5 hours.

Then came the wait. Oh god the waiting. It’s like being trapped in a never ending nightmare, the ones where you are trying to scream but no sound comes out.
Finally, after what felt like an eternity, I had my appointment with Rosalyn. The skin margin had come back clear. Amazingly, after all the time it had been in situ, there had been no spread to surrounding tissues in my hand. I couldn’t believe it. This meant that I wouldn’t have to endure radiotherapy or chemo. There has to be a silver lining somewhere right? She told my that my official diagnosis was a clear cell sarcoma. Her parting words were that the odds of it coming back were the same as going out and getting hit by a bus, so go home, don’t dwell on it too much and live my life. I had every intention….

The recurrence of sarcoma is high and if in the case it does come back, it’s usually a lot later rather than sooner.
I was to have my lungs X-rayed every 3 months for the next 5 years, to ensure they were clear and have thorough examinations on my hand and arm at every appointment.
Every 3 months, the same terror filled me. What if they found something? What if it came back?

In between pregnancies, I attended the sarcoma clinic for 6 years in total. I met some of the loveliest staff and in a way I was sad to say goodbye to them. But I have never been more glad to see the back of a hospital before.

Throughout, I always tried to remain positive, but my biggest fear was leaving my children without their mum. Never did I ever envisage that it would be in fact one of my children leaving me. I would do the whole thing over a million times, if I got to keep my Sam.









Sometimes, you just have to be done…….

*Trigger warning*

When I wrote about Sams diagnosis, I briefly touched on the state of my mental health and I said I would address it in another post.

This is an absolutely huge thing for me.

People are so afraid to talk about anything to do with ‘mental health’, well one because it has the word mental in it, so anyone suffering must be crazy and two, you can’t see it. So if you can’t see it, it doesn’t mean that it’s real right?
Wrong, oh so very wrong. Mental health problems are every bit as real and debilitating as a break to a bone. We all have mental health and as such should be able to talk to anyone and everyone about it, like you would about your broken leg, without fear of judgement when things aren’t feeling quite right.

My battle with my mental health started when I was young. Around the age of 11. Unbeknown to the majority, I had suffered some abuse at the hands of a cousin, who shall for his own benefit remain nameless, for a number of years. What he managed to do to me over that period of time was wear me down and chip away at my self worth and made me believe that everything he did to me, I had asked for, wanted and deserved. I didn’t want anyone to know. I was so deeply ashamed and honestly believed for a long time that it was what I had wanted.
At the age of 11, I truly thought I wasn’t worthy of love, that after what he’d done to me, no one would want me. I was damaged, tainted, why would anyone want to love me? I was unworthy. Unworthy, worthless.
I hated what he had made me. I hated the way I looked, spoke, thought…….in fact let’s just say for the record I hated myself.

This feeling of self loathing continued to build momentum and peaked around the age of 13. We sadly lost my grandad that year and it was the first death I had experienced. I was always very close to my grandad and I really felt his loss and didn’t know how to deal with the emotions that were weaving through my ever overactive brain. I felt so much anguish, pain, sadness, anger. Not just from the death of my grandad but of course everything else that had happened to me that I was too young to understand and never had the capacity to deal with. Really how do you start do deal with those kinds of events?

I laid in bed one night, and felt these unbearable feelings wash over me again, and absentmindedly, I started scratching my arm. I realised the pain from scratching took away some of the noise and pain I felt in my head. And that is how easily my journey with self injury began.

Now, I know how it sounds and I know very well how it looks but let me tell you something. This wasn’t a cry for help, this wasn’t me trying to kill myself, this was a way to survive the chaos in my head. It would be the way I would cope with anything that overwhelmed me to a point where I couldn’t deal with my emotions. It would become the way I would deal with the traumas of my past, producing a physical wound to finally put to the scars I had mentally.
The pain of the cutting would give me the sense of relief I needed for all the emotions I had ever felt and held on to. A bit like the relief you feel when you take a deep gasp of air after holding your breath under water.

The most common misconception about self injury is that it’s all about cutting yourself. This is absolutely not true. Self harm can take many forms, drinking to numb the pain, self medicating, burning, biting, hair pulling, scratching, starvation, nipping to name but a few. Some people don’t realise what they do when they are stressed or upset is even classed as self injury. But you often find these are the people that are so quick to judge.

During my teenage years things became so desperate in my own head I carried a pair of scissors with me to school and a razor blade inside my phone case, how awful is that?
The pressure to do well in exams, mocks, coursework, revision, more revision, the breakdown of my friendship group, the harassment from said ex group of friends among other things just became too much and I was cutting on a daily basis. School would never find out until I left. I knew they had a duty of care. I did contact them however afterwards to ask them what they planned to cover self injury in their PSHE lessons, as the content they had was pretty dire. Here is where my contact with my wonderful ex teacher and now very thankfully, friend, started. I helped her compile some resources that she could use in her mental health lessons and I believe she still used them until she stopped teaching.

At the age of 17 I met my husband, then boyfriend. He told me that if I ever cut again he’d leave me so I promised I wouldn’t. More afraid of losing him than satisfying the need to numb my pain, I suppressed it for a long time. But that’s all I was doing, containing it. Not dealing with it. But, I remained true to my word, for so long.

Fast forward to Ocober 2017 and more trauma than I care to mention later, during the period where Sam was undergoing his testing, I was suffering with ridiculous bouts of anxiety and was struggling to sleep. I would finally drift off feeling anxious and wake up feeling crippled by it. My GP started me on a course of antidepressants and they served their purpose well for a while.

Upon receiving the diagnosis that sam was losing his eyesight, I was absolutely catatonic. I felt everything all at once. Anger, guilt, sadness, fear, and then more terrifyingly, I felt nothing. For weeks.
Speaking to my friend, she will tell you that this period of time with me was horrendous for anyone watching. She likened it to going out with a zombie. I felt broken. I was there in body, but nothing else. I felt absolutely nothing, numb. And I had never felt more alone, even surrounded by so many people I knew who loved and cared for me. How could anyone possibly understand how this feels?

There were days when I have felt myself spiralling and unable to stop it. Days where I have fallen to my knees unable to pick myself back up and I have cried until my throat was raw and my lungs burnt. 
I have drunk until I couldn’t feel or remember anything.
I have taken too many tablets to numb out the pain only to end up so ill that it felt like my kidneys were trying to claw their way out of my back and my liver had packed up and left the building. 
I have cut so often to try to bleed out the mental anguish I felt, to punish myself the way that life seemed to be punishing me. For it to keep throwing all this heartache my way, clearly I deserved to hurt.
I have driven recklessly and without a second thought for anyone else on the road or the people waiting for me back at home, at 80mph down the fast lane on the motorway with invasive thoughts telling me it would all be over in a second, all it would take was a slip of the steering wheel.  
I felt like I was drowning, suffocating.

And then sometimes, sometimes, you just need to be done. Done with thinking this was the only way to survive the chaos inside you. There has to be another way. I don’t deserve this.
In the April after Sams diagnosis, after speaking to a very good friend who had seen me through numerous meltdowns at varying stages, again suggested seeing a counsellor (she did mention it a few times before I gave in I will add, not that Im stubborn or anything)
I realised I just couldn’t live like this anymore. I didn’t want to live like this anymore. Turns out, going to see Dawn was the best thing I would ever do. She would, just to name a few things, help give me the tools to see things from a different perspective and other ways in which to vent my frustrations, like writing funnily enough. Most importantly she helped me reclaim the voice that was taken from me as that little girl all those years ago. And oh how empowering that finally felt.

There is a lot more to me than meets the eye. I’m complex and sometimes not as strong as I like people to think I am. And just like everyone else I struggle, I crack, I falter. Some days more than others. Even after therapy.
But I know that I am enough. I am so incredibly enough and I am only human.

#itsoknottobeok, It’s ok to admit that you need help, sometimes it’s knowing how and when to take the first step. Sometimes its during the worst storms of your life that you finally see the light in the darkness. Trust that there are people there to catch you if you should fall. But know you have to let them in first.

On the other side, if someone is reaching out to you who is having a hard time, please, treat them with respect, kindness, open mindedness and most of all love. They are trusting you with their very fragile heart and mind, don’t break them.

It’ll be ok. We’ve got this.



A date with Batten’s…..

This is probably one of the hardest posts I will ever have to write.

Have you ever had one of those dreams where you are running across a road and you can see traffic approaching. But just within reach of the other side of the pavement , you fall. You can see the cars getting closer and you are trying your hardest to get to the other side of the road, out of their path. But no matter how hard you try, you just can’t move fast enough. Sheer panic sets in, the nausea, the fear of what is heading towards you. And yet you still can’t get yourself off that road.
Well, that’s the only thing I can really liken my appointment to with Sams geneticist, Dr Parker.

When I arrived, I was actually in a relatively good mood considering my severe sleep deprived state and lack of caffeine for that time in a morning. We checked in, sat down and waited. I saw Dr Parker come out of one of the side rooms, he clocked me and turned a significantly whiter shade of pale. I did think it was an odd response, surely I didn’t look that bad? I mean christ, I knew I looked rough but I am a mother of three, it’s tiring. He disappeared off into another room. 5 minutes passed and off he pops out again, sheepishly looked at me and then darted off again. Something very peculiar was occurring but I’d somewhat missed the memo.

Ms Patterson, the genetic counsellor, then appeared and floated across to me and my mum, who attended the clinic with me for moral support, to ask if Sam could stay outside the appointment with one of their play specialists. Clearly not knowing my Sammy, I actually laughed a little in her face and said he wouldn’t stay with anyone he didn’t know. She was incredibly hesitant and persisted that I shouldn’t go into the clinic appointment alone. Now I knew there was definitely something amiss. But still had absolutely no clue what was coming. Again I reiterated that Sam would not stay with anyone but my mum, so I headed into the appointment by myself.

Dr Parker was still that awful pallid colour he had been in the waiting room. He held out his hand for me to shake it and it trembled as I took it in my own. I sat opposite him as he ran through what had happened at our last meeting. And then the words gracefully and quietly tumbled out of his mouth “I’m so incredibly sorry, but the results have come back and they aren’t good. They have found that Sam has changes in a gene called CLN3, which is something called Juvenile Batten Disease” I stared at him. I’d never even heard of it. His words had no meaning until…….
“Its neurodegenerative and there is no cure. I am so, so sorry”
I felt as though my stomach had fallen through my legs and I’d trampled on it in stilettos in the process. At that moment, my world stopped. My ears were buzzing like they do when you are about to pass out. What had he just said? Neurodegenerative, no cure……what???
Dr Parker looked at me full of sympathy and told me that nothing would change overnight, Sam would still be Sam, go home, read the leaflet and make memories. I felt my stomach lurch, make memories…..oh god, what just happened? Was this even real? Surely this was one of those dreams?
He once again told me he was sorry and I was right there on that road with the cars fast approaching. I left the room and my legs felt like lead weights.
They would take my mum in next to explain the same to her.

I sat next to Sam in the waiting room as he happily chatted away, asking what the farmyard animals were that he could feel and what dinosaurs he could find on his pad. I silently stroked his head and answered him the best I could as the biggest, fattest tears streaked down my face and landed on his hair. My boy, my beautiful boy, the baby that had made me a mum, had been given a terminal diagnosis. He was going to die

My mum came out of the consultation room and we left the outpatients department. As soon as I got outside, I couldn’t breathe. It felt as though someone had stolen all the air from my lungs and I couldn’t get them to work again. I was in that nightmare, except this time the cars had actually reached me. Everything hurt, my head, my chest and all I wanted to do was hold my little boy and stop time.

Realising that I then had to drive home was……fun?But that’s where I wanted to be, home. I was trembling from head to foot and it wasn’t much improved after caffeine either.
I don’t really remember much about the drive home if I’m totally honest. I couldn’t tell you how fast I was driving down the motorway, or how long it took to get home. Sam of course made me play scooter-jumping all over the world, on repeat all the way back to school.
All I wanted to do was get back to the house, so that I could fall apart.

As soon as I shut and locked the door, I sobbed. I sobbed like I have never cried in my life before. I cried for Sam, for what he was going to have to go through, for what he would never grow into, what he would never be. I cried for the girls, for how this would change their life, how it would be for them to watch their brother die possibly before they were both out of primary school. I cried because there was a possibility that they both too could have it. I cried for the family that would have to watch the same process. But most selfishly I cried for myself. I cried for the loss of a future for my first born child, I cried because I couldn’t bare the thought of having to eventually say goodbye to him. I cried when I started to read about what the disease actually entailed and how and roughly when Sam would start to deteriorate. I cried because I don’t get to keep my boy. He’s going to be taken from me in the cruelest ways and he will have gone long before his body gives in.

I honestly thought after everything I have been through in my life, nothing could ever break me. The diagnosis of sam being blind was hard to swallow, but at least he could live a relatively normal life. He could live.

This……how can you ever come to terms with something like this?

“An increasing visual impairment resulting in blindness; complex epilepsy with severe seizures that are difficult to control; myoclonic (rapid involuntary muscle spasm) jerks of limbs; difficulties sleeping; the decline of speech, language and swallowing skills; and a deterioration of fine and gross motor skills that result in the loss of mobility. Ultimately the child or young person will become totally dependent on families and carers for all of their needs.  Other symptoms that are commonly seen are hallucinations, memory loss and challenging behaviours. Death is inevitable and, depending on the age of onset and specific genetic diagnosis, may occur anywhere between early childhood and young adulthood.”
(An extract taken from the CLN3 BDFA leaflet)

Life had finally managed to break me. I never believed your heart could break. It’s a muscle, not a bone. But I can honestly say, that day my heart was (and still is) absolutely broken. It hurt like nothing I have ever felt before. It ached, like it was ripping itself into pieces and then being thrown against my ribs for good measure. My lungs burnt from crying so hard that I couldn’t catch my breath and I had pins and needles in my hands. What had we done to deserve so much heartache?

This diagnosis changed absolutely everything. It changed our futures. None more so than Sam’s. But at the same time, I also realised that this didn’t change anything at all. A fault in a genetic code doesn’t define who sam is. As Dr Parker had said, Sam is still Sam. And he will always be Sam. His loving personality and cheeky side are what make him, not the disease he carries.

How can you ever heal from being told you are going to lose your child?
My heart is irrevocably broken, and while it will never be the same again, I am very fortunate that there are beautiful humans in my life at the moment who are very well equipped to hold all of my broken pieces back together, while I learn how to breathe again.

And so my introduction to Batten’s was over and I can’t say I enjoyed my date. But it looked as if we were going to become more acquainted over the coming months and years.

My mission now is to make the most of the time we have left with Sam, whilst he is still able and capable. It’s my job to make every memory count. I just hope I have strength enough to do my beautiful boy justice.

And so it begins…….

I’m still not entirely sure what this last year has been if I’m totally honest. Over the past 12 months I have been dealt two cards I never in my wildest dreams anticipated. The first was handed to me 3 days after Christmas last year.
In May of the same year, I noticed that Sam was struggling to read what he had previously been able to with no problems whatsoever, had started holding his iPad up to his face when he was using it, was struggling to focus when it was very bright outside or equally if it was dark. He had passed his vision exam at school with flying colours, and his teacher, who in hindsight was absolutely rubbish and knew nothing about my child, informed me she hadn’t noticed anything different about him. To be on the safe side I took him to visit the optician. Again, the optician couldn’t find anything wrong with Sams general eye health, said he had a very mild prescription for short sightedness but not enough to give him glasses but noticed he struggled to pick up the 3d shapes when asked, so as a precaution he referred him onto the hospital.

When Sam joined his new class in July, within three days his teacher saw how much he was actually struggling. From here on she has been a huge part of this journey and pushed every step of the way with me to get the answers we so desperately needed. We explored every possible avenue within school, dyslexia, adhd, dyscalculia, to no avail.
Despite my breakdowns on her in the classroom and over email, I honestly don’t know what I would have done without her support. She is genuinely one of life’s beautiful humans and I will be forever thankful to her.

Anyway, our referral came and we attended Rotherham hospital for months, undergoing every test they had available to them, with very little explanation and very little patience from staff with regards to how they treat a little boy who tried his very best to do what they were asking of him. His eye examinations were very sporadic, changing every time we went, with no continuity. Staff were perplexed, as his prescription was correct, but he still maintained that he couldn’t see the letters/pictures they were pointing out to him. I was so frustrated at the time. When health professionals are telling you that there is no logical reason he shouldnt be able to see it, I thought he was just being a lazy boy, and will admit to getting cross with him a few times. Major mum guilt going on with that one right now I can tell you.

As a last resort, the staff at Rotherham referred Sam up to the Hallamshire for some electrodiagnostic testing in November. For those that don’t know what that means, basically, you go into a room, have lots of little probes stuck to your head and cheeks and then the lights are turned off. A series of lights, flashing and non flashing are shown to you and you are asked to look at them for a specific length of time. The responses from your brain and eyes are monitored and recorded on a screen and the results are interpreted at a later date. The doctor who performed these tests and his assistant were absolutely amazing with Sam.

Fast forward a month to the 28th December and we had an appointment for the results of the electro tests. I had a feeling that there was something wrong but didn’t fully anticipate what I was walking into going to that clinic. So at 8.30, we sat in front of a Dr who quite bluntly opened Sam’s notes, told us his results indicated that he had severe diffuse cone rod dysfunction which suggested macular involvement (see how ingrained in my brain that is, I don’t even need to google) said he would refer him to the visual impairment team and wished us a happy new year…………..

What honestly just happened????? All I heard out of that entire appointment was visual impairment…..my child is blind…going to go blind?……when did that happen?How?What?

Absolutely reeling and my head banging, when I got home I began to google. Now, don’t get me wrong, google is a myriad of things. But to a parent who’d just been given this diagnosis, from a trained medical professional, with no explanation, it’s the absolute devil. There was so much content on the internet and the details varied so much from slight visual impairment to registered blind. I felt like my world had just been turned on its head. Anyone who saw me in the days and weeks that followed will tell you, it absolutely broke me, no matter how much I tried to hide it.

Yes that might sound like a slight exaggeration to some but Sam was a completely normal, healthy, active little boy, how could this even be happening? My heart hurt so much. Every hope and dream I had for him changed in that one sentence.

There was no family history of sight problems, apart from the usual wearing of glasses. Where had this even come from? These types of eye conditions usually have a strong family history, and yet here we were…….with seemingly nothing to go at.

I won’t discuss my mental health on this post, thats definitely worthy of a post of its own. But I was struggling massively. Unhappy with Rotherham hospital, I made an appointment with my Gp’s and they agreed to make a referral for Sam to be seen at the Hallamshire. Here we met Miss Tandon, who was beyond wonderful. It makes me want to cry thinking about her. The first time we met, she addressed Sam directly, asked his permission to speak to me and his dad and was just so, so lovely. She explained to us in depth what Sams diagnosed condition was and said that she would be registering him as legally blind at that appointment.

Sam had been diagnosed with cone/rod dystrophy and registered severely sight impaired under the category of retinal dystrophy. This meant, in the most basic of terms that the photoreceptors in Sams eyes (cones responsible for higher level lighting and colour imaging, rods for vision at low light levels) basically didn’t work as they should. Retinal dystrophy is a genetic condition that usually has a strong family history. As such, Miss Tandon referred Sam for genetic testing and explained as it was genetic, there was also a possibility that our girls could have it too. But we would wait and see what results came back for Sam first before considering testing the girls as they were and still are completely asymptomatic.

We met with the geneticist in June where he arranged to take a blood sample from Sam and sent it off to Manchester for testing. He explained that there were literally hundreds of gene combinations and it could take months to find what they were looking for, if in fact they found anything at all. Again, I never expected anything other than confirmation of what we’d been told he had already. I thought to myself, the worst result out of this is that they haven’t found a cause so we have no hope of a cure. Oh, how I wish that were the case.

In the meantime, Sam still had some vision left and speaking to the cone/rod community, who again were absolutely wonderful, we hoped and prayed that he would keep this for some years to come. However, watching him in the months that passed, I knew that wasn’t going to be the case. His vision deteriorated so quickly to the point where he was relying mainly on his touch to move around and identify objects. Some days it does seem better than others.

Then came the phone call on the 27th November to say that an appointment had become available at the northern general on the 7th December for some results that were due back for Sam, could I attend?
Of course.
Little did I know how my life would change at that appointment. Here I would be dealt my second card.
From having a little boy with a severe sight impairment who, although changed to what we had hoped, had a whole life in front of him, to being given a terminal diagnosis and the cruel realisation that I would have to watch my baby die and not be able to do a thing about it.

Life begins at 30

Well technically almost 32 if we are being pedantic. 

If I had a pound for the amount of times I have heard this phrase, I would now be uber rich and living on an island somewhere beautiful and hot, all by myself with an endless  supply of gin. 

“The best years of your life start when you get to 30”  

As I approached my 30th birthday, silently reflecting on just what the actual proverbial my life had been up to that point, I lost count of the amount of times that this was said to me. I used to smile and inwardly laugh, really what else could life have left to throw at me? Clearly did not anticipate the next two years………

Everyone has heard the saying ‘life is too short’ and most take it as a throw away comment. 2018 was the year I would truly learn the meaning of that sentence. 

For the first part of this year I was left reeling after being told, rather bluntly and without the smallest hint of compassion, that my little boy, Sam, who at the age of 7 was going to be registered as blind. This was a diagnosis with no real cause as to why all of a sudden he had lost his eyesight and had done so very rapidly.

I dealt with this the way I have always dealt with trauma. I shut down. I was catatonic for a good 3 months. My heart hurt for him but the rest of me was numb. It got to April and I knew I was a mess. It was then that I realised that for the first time in my life, I had to deal with myself. Not just the issues surrounding Sam. All of it. 

And wow, what a lot of baggage I’ve held on to over the years. Abuse in childhood, mental health issues, cancer diagnosis, miscarriages, therapy, a marriage breakdown and most recently the new, none improved, crushing diagnosis of my small man cub. 

April saw me embark on what would be the start of a whirlwind journey. I reached out to my Gp for help, she was great, the mental health services however……were dire!!Which meant I began the search for a private counsellor. Who I found through a mutual friends recommendation. As soon as I walked in, I knew she was the right one for me. In the sessions that I had, I was essentially brought into the light, from the darkness I had been perpetually stuck in since my early childhood. Even in the short few months that have passed since I left therapy, I realise that the huge choices I have had to make this year are ones that were needed for my own sanity and wellbeing. But I’ll save those for another post. 

Now don’t get me wrong, confronting my issues has had its huge positives. There have been days where I have felt so in love with my life, where I would laugh until my sides hurt with the people who mean the most to me. There have been times where my heart has felt so full and complete, I thought it might burst. I have learnt to forgive myself for the actions, thoughts and feelings of others that they have projected on to me and learnt to embrace how cathartic that feels. 

At other times I have never felt more alone. I have really had to take stock and acknowledge just how poor my mental health was and subsequently became because on more than one occasion over the last year, I felt completely out of control. Which, I won’t lie, has been absolutely terrifying.

People don’t talk about mental health……it seems absolutely crazy to me, but again I’ll go on to talk about this at another time.

So this, lovely people, is the start of my journey, documenting my past, my present and most importantly, my future. 

For myself, my girls and more importantly, my gorgeous boy.