10 years on from hearing those words 'Neuroblastoma Cancer'

So it is 10 years since I first heard the words Neuroblastoma Cancer which ripped our families lives apart and has forever left my heart shattered. 10 years since I had to put those big girl pants on and learn how to 'dance in the rain'. To learn how to adapt the life I thought was evolving and take a different turn.
I suddenly gave up work for 2 1/2 years. I was in my prime....going places...it came to a halt. I had to learn to not plan or at least learn to accept if a plan happened that was a bonus. That was so hard...just as it has been for everyone over the last 18 months with the COVID pandemic.
But going back 10 years, Callum was 2 and Harry 4. Those toddler years and tantrums drawing to a close and a more sophisticated life was on the horizon. It was like a record being scratched in the middle of a symphony. Living with Harry's cancer meant being up in the night again, sleepless nights....this was how it was for 2 1/2years. Even when he was well I would lie awake wondering how long the good times would last.....but just like Dory we had to 'keep swimming'. Living with the knowledge that Harry was terminally ill...never knowing quite when his time would be up...feeling elated he reached his 6th birthday ...I mean that's a topsy turvy world.

But yet within those 2 1/2 years that Harry had cancer we met some amazing people; had the best times and soaked up the phrase 'live every day as if it was your last.'

Friends pulled out all the stops and enabled us to creat some fabulous memories. Those memories are recorded in photo books that Lucy likes to look at, enabling her to get to know the brother she'll never meet. This has a flip side as she knows about death already.

Life froze after Harry died...the fog set in and I know Harry's death deeply affected so many and I think I realise this more so now than I ever appreciated at the time.

Grief is consuming....it us under estimated...taboo...not talked about. Grief can be so debilitating...society does not have a healthy place for grief and yet to grieve and be supported to do so can really help us learn how to live with grief...to walk along side grief rather than letting it consume us or affect us physically.

So Harry died in 2014 and the last 7 years have been about how to live a different life to the one I thought I was going to live.

I never ever thought I'd be a mum again at 41. I'm not going to lie...for me being a parent in my 40s has been hard on so many levels. Lucy is a force to be reckoned with and I do let her get away things the boys never did....but then the pandemic hasn't helped.

I started 2020 with so many plans, the move again to a more sophisticated life was on the horizon, I was planning nights out, fun things just for me...but COVID happened and again life took a twist.  All those coping mechanisms myself and my family had developed came crashing down. Our annual trip away over Harry's Angelversary was not possible....nothing felt possible...at a point when the last thing I wanted was to spend time just with my household...that's exactly how the forthcoming weeks was played out. I was ready to be a social butterfly again...but the world came to a halt.

Grief set in again in a different way. Trauma revisited as COVID triggered memories of how life in 2011 came to a halt.

Last year was a rollercoaster... lockdown..eat out to help out....the tiers system..lockdown...then the road map...oh yay we can plan...but oh no you can't, because bubbles then collapsed left right and centre.

We are now in a period of uncertainty for so many reasons, but at least I'm getting out and rebuilding a life. I'm not sure what my coping mechanisms are any more, but I'm learning and adapting.

I'm definately a different person. I'm very aware of the fragility of mental health and how we need to break down the stigma still associated with this. It's acceptable to take time off for physical health issues, but for mental health and self care, to help repair and heal...there is still a very long way to go.

I have learnt to live so much more in the moment and have learnt the value of mindfulness. Learning that if I can't control situations I can control how I react to them....learning that I have no power over the hand of cards I have been dealt, but I do have power as to how I play those cards.
I have learnt what it's like to be on the other side of a social care assessment and continuing health care....to feel that exhausted carer with not much left to give and though I wish I did not know, it has given me a depth of insight into the daily lives of many of the people I try and support on a professional level.

I also experienced the benefits of the benefit system, but also the perils that people talk about...for we got a letter several months after Harry died to say they had paid us too much and we found ourselves owing money back...to this day we still don't know why...But we fought and lost and paid the money back over a period of time....thankful to be back in employment and no longer in need of the complicated benefits system!

So, I wonder what the next 10 years behold. The greatest tool to have is learning to adapt, accept those different paths and remember to Live, Love and Laugh.

Jan 2018

Apologies for not writing on here sooner. Welcome to 2018.

So Lucy Mia Freya was born on July 6th.
Via emergency c-section.
So not the birth i wanted  i know they rarely are, but i had pleaded for a planned c-section and the result to placate me was to book me in 3 days after my due date. Lucy was born 2 days before her due date!
Following a visit to hospital due to having a bleed, but was told it was a 'show' and brown blood was normal, i continued to bleed. I saw my consultant for a sweep a few days later to again be told the brown blood discharge was normal. I had period pains and the week pre Lucy being born felt like early labour to me. At my sweep i was 2 cm dilated.
However, as feared things changed on the evening of the 5th July after Paul had left for his night shift. At around 9.15pm i thought my waters had broken, but upon inspection i was haemorrhaging red blood. I quickly sit on the kitchen floor and phoned 999. I really thought i was miscariaging and was terrified.
I phone my dad to come up and stay with Callum and manage to reach Paul to come home.
I get blue lighted to Harrogate hospital.
Apparently it was heaving so i say i'll go anwhere, but as i'm booked in that is where i go, they were afterall getting extra staff in.
So i arrive and get taken to the delivery suite, but get a slot in a room of several pregnant mums all with some complication or another and all at various points of pregnancy.
So no privacy. Again i am asked all the questions about my family and again i have to mention Harry re previous births and again explain that he has died.
I discuss my desire for a planned c section. I am asked to explain why i want one. Well because i am haemeraging blood for one and terrified that my baby will die. I then explain about Harry, aware all and sundry will hear too and that is not fair to them and me. Nobody reads my notes!!
My blood pressure is through the roof. I keep saying it's anxiety, they test for pre eclampsia as is routine. I have to take tablets to bring my blood pressure down. Paul is with me and feels helpless and powerless.
I need a wee and am told to use the toilet. I am bleeding, but told to put a pad and pants on! I refuse and a bed pan is reluctantly brought to me!

At 4am i accept nothing will be done to induce me and i am told my case will be discussed again at ward round. Knowing hospitals i knew this could be mid morning, so i suggest Paul goes home to get some sleep.

I am left alone, lying on my side, not daring to move as my baby girl's heart beat is being monitored and it keeps going up and down. I have to buzz periodically for assistance, nobody routinely checks me.
I use my mindfulness techniques to keep me focused.

The point of mentioning all of the above in  such detail is that for me and my mental health, i wanted to avoid being in this situation. It brought back too many flash backs of Harry. This brought tears to my eyes and again this is all misinterpreted. I was grieving all over again, thinking of Harry, but nobody knew this. I kept having different people answer my call button. One doctor seemed to get me, but then he seemed to be bumped off by a consultant whom sadly did not have an empathetic bean in his body.
So wait till morning i did.
Then at 8am my contractions start. I can't reach my phone to contact Paul.
I monitor them for 10 mins, then realise they are coming close together. 8am signified the change of shifts and doctors.
The new consultant comes and sees me and i tell her about my contractions. She does an internal inspection and finds that the umbillicol chord is blocking the entrance for a safe natural delivery. She was completely different in manner to the previous consultant. She seemed to have read my notes and was aware i had requested a c section in the first place, i felt joyous at being helped and being listened to. I sign emergency c section papers and get rushed down to theatre. I call paul to come back.
Since the spinal block did not take affect quick enough i had a general anaesthetic too.
I missed seeing Lucy come into this world. Paul missed her arrival too. Due to having a general he was not allowed in theatre.
He was terrified too as though Lucy was born at 9.02am he was not informed of her arrival till 9.30am, but also not told if she was ok till he was able to hold her some 30 mins later.

So the arrival of Lucy was traumatic.
I felt very aggrieved about this, as i had tried very hard to articulate myself during my pregnancy to have a controlled birth. Something i felt i needed.
I feel in some part i do suffer from post traumatic stress disorder. Not all the time, but i guess due to being frequently in a medical environment because of being pregnant, it brought back a lot of flash backs for me. I was also concerned about my age, disabilities etc etc and i was failed.
Usually i can control my flash backs which to be honest in the main part are not frequent, but the hospital environment brought it all back and i think mainly my lack of control of events brought back how i felt about Harry at points, particularly in the last 3 months of his life. I was never in control re lucy's birth. I was never listened to. My notes had never been requested re my previous births. Basically i had no trust in the system.

For me i needed to control events as far as was possible. If i had been given a planned c section at 39 weeks the above would have been avoided.

My stay in hospital was filled with each member of staff asking me if i had other children and ages. Again i explained each time about Harry. Well the woman in  the next bed had just had her 3rd child, so i could hear from conversations and i wasn't going to deny that Lucy was my 3rd either.

This went on for the 2 weeks after Lucy's birth as i saw different midwives and each asked me if my first.

Again this happened at my 6 week check at the doctors!!!

I have to say the first few weeks of having Lucy was a lovely whirlwind with Callum being off school. We visited friends in Scotland and went to Dumfries in our caravan with Lucy being 3 weeks old. We went to kettlewell for the scarecrow festival and stayed again in our caravan, when she was 5 weeks old!

When callum went back to school, it all hit me. The birth, having Lucy, what to do all day as Callum was at school. My fear of baby groups, meeting new mums, talking or not talking about Harry, but most of all Harry's pending 10th birthday on 12th sept. Oh how i suddenly really missed him. Lucy reminded me of Harry, which brought great memories, but sadness too.

I suddenly felt paralyzed. I ended up in uncontrollable tears when taking Lucy for her 8 week injections. I told myself it would be fine as i'd had no issues taking the others.
What i didn't bank on was whilst holding Lucy tight i had a flash back of the numerous times i had held Harry to have injections. Tears rolled down my face.
I thought i had booked in with a well known nurse, but she was on holiday. The nurse knew nothing about me and again misconstrued my tears. When i explained about Harry i also garbled on about everything else. I was an emotional wreck.
I had been trying to put Lucy's horrible birth behind me, but the way i was not listened to, was how i felt many a time when managing Harry. That horrible helpless feeling.

I endeavoured to get some counselling and did this via Candlelighters. A week later i had my first session.
3 sessions later i felt more me again. I had attended a baby group and also i had written to my consultant stating my concerns over my care, despite my continued efforts to emphasise my anxieties and reasons for wanting a planned c section. I wasn't sure what i would achieve, but via writing the letter i felt i had put some closure to Lucy's birth.
I eventually was contacted by my consultant and invited in to chat to him. Until he had got my notes of Lucy's birth i don't believe he knew how i was admitted etc. I had seen him in passing after Lucy's birth and the way he reacted was as if i got my wish for a c section.
Upon my discussion i felt he was sorry he hadn't given me a planned c section.
He also was able to say that my care was substandard in the sense that it had been unfortunate that upon every visit i had seen someone different, so my discussions around my anxieties were never followed through. He also said that my notes from my previous births should have been requested, but hadn't.
Whether lip service, the meeting made me feel better and i felt i could move on.
I also wanted to highlight the importance of listening to patients, particularly when they have had trauma in  their lives and openly discussing anxieties. These are real and are as debilitating as physical problems.
I very much wanted to get across that not only did i have to heal physically from the c section, but mentally as well.
I felt he got this and he said he will take on board what i had said and he has learnt from my experience. I will never know, but i have tried to ensure others are listened to more.

Lucy is now 6 months old.
Callum is so proud to be a big brother. It seems to have helped him. He does still very much miss Harry. He wishes we were a family of 5, which we are, but not on this earth.

I have been to a few baby groups and met a few mums now. Sometimes i mention Harry, sometimes not. It helps that a couple of people i know have recently had babies and so already know all about Harry.

Lucy has a smile like Harry's and has the ability to put a smile on other's faces, just like Harry did. Lucy means light afterall.
She is feisty like both my boys.
She is gonna have spirit and create much mischief!

June 2017

I haven't written on here in a long time, but felt it was time to share with those who don't know that we are having a baby girl in July!
Turning 40 last year and seeing Callum grow up so much in the last year plus, made us really think and we decided to throw caution to the wind and just see and here we are!!

I can't say in the first 2 years after Harry died that i wanted another child. Paul did, but I wanted to reclaim my life, do things for me. Find ME.
I felt I should be grateful for what I have, 1 healthy lovely boy, whom we have worked hard to nurture after the turbulent time we had when Harry had cancer.
However, I have to say a turning point came when someone I know was having a baby in September 18 months ago. The month Harry was born. It was not someone I know well, but a work colleague. There was baby talk in the office. I realised that i was turning a corner. Having felt so exhausted from 6 1/2 years of feeling completely depended upon, because just as life was feeling to become a little easier as Harry turned 4 and Callum approached age 2, sleepless nights began again with Harry experiencing what we later knew were symptoms of cancer. The sleepless nights continued throughout harry's 2.5 years of living with cancer, leaving me exhausted when he died and not in a good place to commence the new journey of grief and learning to live without Harry.
Therefore the mere thought of babies exhausted me. The thought of that dependence, sleep deprivation. It wasn't for me. However, slowly as I put myself back together, reclaimed my life, nurtured Callum into a much more confident boy, got my marriage back on track and career wise felt back in the saddle, well, perhaps anything was possible. I realised life isn't for many of us this well set out plan as I believed in my early 30s. Doing the sensible thing I thought by having 2 boys close together pre 35, pre the so called danger zone of being classified as a geriatric Mother! I chose and had my boys at what I felt was a sensible age. Careers established, mortgage secured, smug maybe, for I was bringing 2 boys up in a financially secure environment.
But then cancer happened. My healthy boy Harry, was no longer healthy. We were suddenly no longer financially secure as i went onto unpaid leave for nearly 2 years. Applying for benefits to help us meet bills.
The rug was well and truly pulled from under our feet.
However, I learnt how to live in the moment and treasure the good days out we had with Harry. I filled several photo books with memories to take me into my old age and to help Callum remember Harry. They are also all Harry's sister will have to help her know her courageous and funny older brother as well as our stories.

So being pregnant following the loss of another child brings its very unique issues, but issues people are soooo not aware of.
On top of the usual emotional and hormonal state that pregnancy can bring, there are added feelings that professionals do not consider.
Feelings of guilt, that i am replacing Harry, never possible, but i had a massive wobble when i found out i was pregnant as i know i will have to redistribute some photos of harry to make room for ones of this baby. She needs her photo on the wall too and i never want her to think she is not good enough.
So for me, a hurdle has been getting my mind set on where to redistribute some photos to. Not a mission accomplished yet, but i have planned it out and feel ready to make room for our new addition.
Harry will always be a part of our family and his picture will always be on our wall.

I have found medical professionals hard to deal with at times too. I am that 'geriatric' mum being 41. I visited our doctors to get in the system for antenatal care. I saw a G.P. whom i have not met before. He talked of the increased possibility of having a child with down symdrome, of Edwards disease etc.
Negativity from the outset. I am now aware that there are so many diseases, disabilities etc and many not picked up until a child is born. Harry was healthy until he was 4. So i get agitated at this focus on tests and eradicating having a baby with downs.
My initial appt with the midwife seemed to focus on the negatives too. My age, etc! Discussions around having a £400 private test to look at the babies genetics and find out if the baby has any problem genes likeky to cause disability. But then what do we do. How disabled would it actually be?!.
Again we had a healthy Harry when he was born.
So much focus on eradicating disability in a faetus. However, we do not know what life will bring. The twists and turns. We do not have the key to perfection. Something i feel has a lot of emphasis when carrying a faetus.
That huge emphasis on breast is best. The lectures, the emphasis on how breast feeding can reduce hospital admissions, make our children healthy. I have to shatter the illusions of these professionals and say i am up for all possibilities and have bottles in and powdered milk ready and will see how i feel. I enlighten people that breast feeding did not stop callum being hospitalised with bronchulitus at 6 weeks and it certainly did not stop Harry getting cancer and dying.
A happy mummy is best, one whom can nurture her baby and feel confident that baby is putting on wait and thriving.
So i will go with the flow.
Obviously one of the biggest things has been discussing Harry. Meeting professionals for the first time. Discussing previous pregnancies. It says in my notes that harry died. But each new professional does not read the notes.
I have highlighted since day one that i have anxieties around the labour due to previous issues. Yes i had normal deliveries. However each one was not a dream; hypnotic; waterbirth experience. Both very medicalised.
I have found it hard dealing with the medical professionals. Being a patient of a  Leeds doctors, but choosing Harrogate hospital already creates a cross between authorities. I had the boys at AGH, but felt i had too many memories and didn't want to go there. Harry was misdignosed there. I wanted new memories, so chose Harrogate. LGI would have again brought back too many memories too.
I wrongly assumed Harrogate would request my notes from AGH and my G.P.. This has left me having to tell each different person i meet at Harrogate, about my previous births and about Harry. The health care assistant will come in first to do obs and pass time by asking if my first. No my 3rd. My mood depends if i can be bothered to elaborate, as the meeting is usually fleeting.
So many emotions are brought up, because each time i am aware i am where i am i.e. pregnant because we lost harry. I do not think we would be having another as life would have been so very different and complete.
My emotions get translated by professionals and not as pure grief.

Having this baby has enabled me to talk about Harry. Such as in the work place. This can be good. We have had a few new people join my department and they ask if this pregnancy is my first and i say no and briefly explain as ages of my other 2 get asked.
I have meetings with people and they look at me and ask questions. When in a professional capacity I smile and  wash over the subject as quick as possible as not the time and place for elaborating.
My dread is baby groups. The initial introduction; the how many children; why a big age gap etc. The reaction from others. The realisation that shit can happen, that children can get cancer and die.
I have realised a new neighbour has a new baby and a 7 year old, so i met her up. I very quickly mentioned Harry. I mentioned him because it is because of him i know quite a lot of people in otley. It is because of him i know more about schools as we have been in that system for 5 years now. By mentioning Harry also meant i can talk about my 2 previous birth stories. Also if people befriend me on facebook, they will see me post memories of Harry and by me telling them what happened, hopefully this makes sense when they wonder what happened.

So here i am at 38 weeks pregnant.
I finished work a few weeks ago because i had a lot of leave to use up.
My desire is to have a c-section delivery. I don't physically need one, but due to issues in my 2 previous deliveries I do have heightened anxiety. I have anxiety around being 41. I  am also so much more aware of disabilities. Having been at martin house; having lived longer, awareness of what can go wrong is there.
I am also a person whom won't take the medics judgememt as gospel. They do not have a crystal ball, they cannot predict that this baby will slide out and i'll be home hours later, which they keep saying could happen and i remind them that this might not be the case.
Since i was told for several weeks by medical professionals that Harry had a virus in those early days when he actually had cancer, forgive me for not hanging onto every word that comes out of the so calles experts mouths.
Yes i respect them, but they have to respect and empathise why i feel like i do too. Sadly in a 10 minute appt it is hard for them to understand and continuity has not been there, having dealt with various different people.

My consultant has eventually agreed to give me a c-section if normal delivery does not happen and i have a date for july 11th when i will be  40 weekd plus 3.

I had a small bleed yesterday and went to the maternity assessment unit. I had to  detail my previous labours. I was asked who lived at home and so again had to explain that Harry died, so does not live with us. Paul was with me and we both had a flash back when my temperature was being taken as we both remembered Harry having his temperature taken on so many numerous occassions. He would then take great joy in firing the plastic end off. He would also collect the plastic ends and make a poking stick out of them. We remembered him smiling and having a sense of humour. I welled up. People then think i am anxious about the here and now. It is hard to explain that by being in hospital or at appts brings back flash backs, memories etc.
Memories that no professional has even the first clue about.

Here's hoping baby buckley makes an appearance asap as i am fed up now. Here is also praying she is fit and well.
We are all looking forward to embarking on our new chapter of life.

I will also end by saying never say never!! I never thought i'd have been pregnant again that is for sure. Life changes and so do we!!

Glow Gold - September

http://www.bbc.co.uk/programmes/p045y70z#play

Above should be a link to the radio Leeds interview, which I did on Tuesday with Jo Shepherd, the director from Candlelighters.
If you listen from 2.10 pm, we are on  intermittently until 2.50pm!
It is the Andrew Edwards show on 13 th sept. I am having diffulty getting the link to attach.

The deputation speech which i did on Wednesday has been a success too and will hopefully be the start of awareness sharing across leeds.

My Scottish pals have been gathering huge momentum in Scotland and have managed to get the Scottish Parliament debating childcare cancer awareness today!

We need Westminster on board next!!

Harry's 9 th Birthday

So I sit here on the eve of Harry's birthday. I have no presents to wrap, no party planned, no excited boy. 

Harry would have turned 9 tomorrow. Alas he remains forever 6 1/2.

I sat in church today and those who had birthdays this week got a dip in the box, not my boy though. One of those hard few minutes to sit through. The world keeps on turning, but ours in some areas stands still. 

I have felt very emotional these last couple of days. That tight feeling inside, that I frequently got for months after Harry died, but less so now. The feeling of anguish, sadness and wishing Harry was here. 

Just as we get through the first few days of school and all the happy smiley faces of siblings returning for a new year, I have to get through another birthday without Harry here.

I was so very touched by a card we received on Friday from an old next door neighbour from my childhood, whom sent a cheque in honour of Harry's birthday for me to give to charity and £10 for Callum. It meant the world to me, because she remembered Harry, she mentioned his name. We also had another card from a fellow oncology mum, whose daughter died in 2012. 

Harry was our first born, our longed for child. He smiled and smiled as soon as he was able. He lit up our lives. Through Harry I have met so many people in Otley, through baby groups, church and school. 

Before having Harry I could count on one hand how many people I knew in Otley. Having children really has been the greatest gift. 

Now Harry is in heaven I have met more people, spreading awareness of childhood cancer. I attended the Leeds centenary Rotary dinner in May as the charity chosen for the year was Candlelighters following a talk I gave to their club last year. I was invited to attend and sat on a table of people I did not know, apart from Jo Shepherd, the director of candlelighters. This did not bother me, because I was there to represent Harry, I could legitimately talk about him. I was sat next to the BBC radio Leeds presenter Andrew Edwards and am going to be live on his show on Tuesday afternoon between 2-3pm with Jo Shepherd from Candlelighters to talk about childhood cancer awareness month - September. I hope to raise awareness of the signs and symptoms, raise the profile of childhood cancer and get it on the map. The more we talk about childhood cancer, the less taboo the subject will be. I also want to break the taboo of bereavement. Our society is so rubbish, most don't grasp it, they pitter,patter around the subject, worrying about what to say. Tomorrow will always be the day I gave birth to Harry, in the very early hours, about 1 am, he came into this world, he was 2 weeks early and weighed 6 lbs 5 ounces! 

Bereaved parents want to talk about their children, they light up when they hear their child's name. 

So on Wednesday I will be making a deputation to a full council meeting in Leeds with my friend Rachel Marshall, whose son, Oliver died of cancer 10 years ago age 4 1/2. We met through Harry as Harry was in her younger son's class. The deputation is to request councillors to glow gold for childhood cancer awareness, to try and get the awareness cards describing the signs and symptoms placed in public places, to get childhood cancer on the map as awareness can save lives. I have met some councillors already from North West Leeds, but this opportunity will give us the chance to spread awareness and in turn the councillors can spread awareness to their constituents. 

On Thursday Jonathan, an advanced Health improvement Specialist, will be taking 500 of our 'be childhood cancer aware' cards to an event aimed at G.P.s and the subject is cancer, he wants childhood cancer discussed too, so fingers crossed this produces results and will make professionals think more when seeing children with unexplained fatigue, temperatures, bruising, sickness etc! 

In honour of Harry I spread awareness and hope others have better outcomes, giving them the birthdays he no longer has with us. 

Summer 2016

Currently we are in a tow truck being towed home having had a lovely 10 day break in Anglesey. Our car Engine caught fire, thus stopped us in our tracks to get home. Luckily we managed to put it out with water and juice we had before the fire service arrived.
We were very lucky it didn't take hold and burn the whole car. Such is life and adds to the adventure!

We had a lovely holiday. Beautiful beaches, a really lovely part of the world. We took our bikes and managed a few bike rides, great cycle tracks and flat!
Holidays are lovely, but away from the hustle and bustle of life it can give time to think that I don't want. We are so aware we are a 3, when buying tickets to get in places to unloading the bikes from the car.
I have played back in my mind the months and weeks before Harry died. Now 2.5 years on, it still feels like yesterday, but I can understand and process what happened differently. Though i still feel aggrieved at the huge effort I had to go through to get a basic care package to support Harry and our family and the disjointed service provision. What I do know is that I still have ghosts that haunt me.
The end of the summer school term felt tough. Callum was leaving year 1, the last year Harry ever entered at school. What happens next for callum is new territory and nothing can relate to what Harry did. It is a case of crossing over the road to the other side and see what is next, but it has felt a big leap emotionally.

September is childhood cancer awareness month. I have been trying  to promote awareness and have been getting local councillors on board with the help of a friend.
I have given talks to a local council meeting and have spoken at a children's sub group, where I met someone else from public health and through his links with G.P. practices, 37 practices have taken the childhood cancer awareness cards I have from the charity 'be childhood cancer aware' and will be displaying them.
The aim is to get the signs and symptoms out there and alongside those displayed for meningitis and septacemia.
Gold is the colour associated with childhood cancer and the 'glow gold campaign' which I am involved with via a Facebook group of oncology parents from the whole of the UK, have been contacting buildings to light up gold from dawn until dusk on 1 st September. So far 160 buildings are joining in throughout the UK.

We are trying to get banks and shops involved too by having gold balloons; awareness cards and raffles etc. We want people to know childhood cancer exists, to be aware of the signs and symptoms  as prevention is better than cure. We want parents to be aware, but professionals too, as I have become aware how common misdiagnosis is and how many children like Harry were told they had a virus; sent home and their cancer grew silently, to the point the cells had multiplied and gained momentum throughout their innocent bodies.
Professionals need to listen to worried parents. Tests need to be done sooner as they are for many other diseases.

I hope together we can put childhood cancer on the map and that the colour gold becomes as synonomous as pink is with breast cancer.

March 2016

Spring is in the air, daffodils, crocuses, lambs. The symbol of new life and new beginnings!

Well I have a new job, based in the centre of Bradford. I started 3 weeks ago, so new beginnings certainly! I also turned 40 last month, so a new decade too! I celebrated entering a new decade with my buddy Heidi, we shared a party and had an awesome night with friends with the addition of pizza, prosecco and dancing! 

I was concerned about starting a new job (a 12 month secondment) as my new team didn't know about Harry. This bothered me a lot prior to starting, I guess partly as the how many children question crops up, partly when detailing the last few years of my career, there is a gap and to gloss over this feels to eradicate 2.5 years where there were huge feelings of happiness, triumph, feelings of a huge sense of achievement, but also feelings of loss, grief, pain and sadness. Life was an immense rollercoaster and we would flip from a fab day out at the park or a trip to the zoo, to the next day being one where Harry was lethargic and lifeless. I am also aware that I know so much about oncology, about pain management, about control over diseases, areas that do crop up in my job and the reason I actually have I feel quite expert experience is, because of Harry. 

What I have gained from those years is that I do not actually believe anything will ever be as bad as the pain of watching Harry slowly die and the feelings of acute and utter grief and  devastation that followed. I think this gives me a feeling of strength.

We are approaching the second anniversary of Harry's death (April 8th) and yes the flash backs emerge. The feelings of this time 2 years ago. I remember a little triumph, whereby harry awoke in a better mood than he had been the previous days, callum was off nursery and the sun was shining. Harry had not been eating and so when he said he wanted some donuts from the canal boat in Saltaire, well that was the mission. Paul was working, but I had a continuing health care nurse visiting for 3 hours, so fab I thought, we can all go on a trip for the morning. I thought the nurse could help me manage harry and callum, as at that point their needs were polar opposites and to be able to push harry in his wheelchair at the slow pace needed as every bump hurt his aching body, but at the same time monitor a giddy, lively Callum, was too much for me to achieve alone. I explained the plan to the nurse and she was up for it, but then realised going to Saltaire meant crossing a border into another council area!!!!! She wasn't apparently insured to work over the border! She checked it out with her manager and the official answer was that she could not join us. However, luckily for us, unofficially she came, following us in her own car and broke the rules. It was worth it, as Harry ate a donut, smiled and Callum had a lovely morning too, running and climbing. Below are some pictures of that day.

 Life was a constant parallel of planning for life at the same time we planned for death. By planning for death I mean, focusing on keeping Harry comfortable with his pain management, versus also keeping him alert; ensuring we were linked to the hospice doctors for advice, for we had chosen to keep Harry at home, where he felt the most at peace. From this time 2 years ago until his death, were the most hideous, it turned out Harry's temperatures were the result of a line infection. I fought against Harry going into hospital during the night to have IV antibiotics to 'cure' the infection. Instead, we awaited clarity from our Mcmillan nurse the next day, whom supported us with keeping Harry at home and 'locking' his line that was infected with antibiotics. The line had been used to give intravenous medications to harry and also used to take blood from harry via his portocath.  Harry was due for a red blood cell transfusion the day we learnt about the infection. Due to the line being blocked, any transfusion would have needed a cannula fitting for access and a day in hospital. Since, we could not keep his blood and platelet cells stable with transfusions we made the decision with consultation with the medics to stop future transfusions. Another very hard decision that had to be made, one which symbolised we were no longer planning on keeping Harry alive, in fact, by stopping transfusions we were aiding Harry's death. His body was becoming a fragile shell and he was tiring with life. 

So yes, there have been tears and sadness as I remember those last weeks. 

Life tumbles on and Callum has started Beavers, he loved the first session, joining his friend Michael, whom he has known since being a baby, however he became tearful once he arrived at the second session. I stayed with him, gave him reassurance and on the way home Callum told me he was upset as Beavers reminded him of Harry. He remembered Harry taking Beaver home for the week. Suddenly, going to Beavers made Callum happy and sad, he found it difficult to process his feelings. However, over the next couple of sessions with support from myself he grew in confidence and I was able to leave him there! Another step forward. I am aware though that very soon Callum will be older than Harry will ever be. This feels strange and poignant. Although in Callum's eyes his brother is always 2 years older than him, currently age 8. 

So back to my new job, I have mentioned Harry, I have mentioned being off with him for 2.5 years and I can breath!!! My new team seem lovely and I will learn lots over the next 12 months. 

I can truly say that I have come giant leaps since I went back to work in July 2014. 

We have some holidays planned this year, including another holiday to Turkey - all inclusive again, but to a different area this time. Sun, relaxation and family time.

Paul and I have also booked for just the 2 of us to go to Gdansk in Poland for 2 nights too.  Our first trip abroad together, without children since I was pregnant with Harry 9 years ago! Can't wait!

Today has been a gloriously, sunny, spring day and the 3 of us have been undertaking jobs in the garden. We moved into our house 5 years ago in May, but then Harry became poorly, 6 months after we moved and jobs in the garden got put on hold. I have to say, for the last 2 Summers there has not been the energy for such jobs as stainning the garden furniture, but today was that day! Callum and I got our paint brushes working, whilst Paul has been creating Alcatraz to try and ensure the chickens cannot get out of their pen. They seem to be a Houdini double act!!!

More sun please, it does truly put a spring in our step, at a time when our hearts are heavy and our MISS of Harry greater.