Thursday, 15 September 2016

Glow Gold - September

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!!

Sunday, 11 September 2016

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. 

Thursday, 28 July 2016

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.

Thursday, 10 March 2016

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. 

Sunday, 3 January 2016

Hello 2016!

So Christmas is all packed up, over for another year. Our belts are tighter, time for all those new year resolutions, more exercise, less booze etc, etc! 
I hate saying 'happy new year' it seems trite. 
For the majority of us a year will be filled with ups and downs of different degrees, none of us know what is around the corner. I remember entering 2014, knowing Harry was unlikely to make it to the next year, that year in particular seemed so very strange hearing people wish us a 'happy new year'. We had no idea on 1.1.14 that only 19 days later Harry would be paralysed from the waist down, by the viciousness that cancer is. Then we lived through some of the very worst weeks of our lives, weeks that still haunt me, weeks, where I felt so totally out of control, helpless, so vulnerable, but weeks where I had to summon the greatest strength ever to get the support needed for Harry from health and social care and strength to go on caring for Harry and I did my best for Callum too. 
Who knows what 2016 has in store, we shall see. I will turn 40, that I do know! A decade ago we were a childless couple, going on many a city break, hoping to conceive, but enjoying life, whilst no children were on the scene. I don't feel 40 is old, I just feel me. Life still has a lot of twists and turns and opportunities to be grasped. I am certainly open to doors being opened and very much a believer in being in the right place at the right time. I have no grand plan. I guess I am acutely aware that the best laid plans have to be changed. I never envisaged having my first born die and so already my grand plans have been altered and now I feel the need to go with the moment, see what is on the horizon and what I should invest my energies in.
I feel a sense of relief that Christmas is over. I don't hate Christmas, but I did feel so very emotionally exhausted by it. Christmas so acutely reminds us of those missing from our families and increases our MISS of our loved ones hugely. I know I have come along way since last Christmas, where we escaped to Whitby for 5 nights. This Christmas Paul had to work Christmas Eve night shift, so we had no choice but to be at home, however we did escape for 3 nights just before Christmas to Hutton le Hole in North Yorkshire in our caravan. This was straight after school broke up and gave me the space to get away from some of the festiveness to brave the full on throttle of the week ahead. 
I couldn't face the Christingle Service, I remember taking Harry and him wriggling when he was only months old, or running after him in subsequent years. I knew going would have reduced me to tears, the memories, the sadness, when it should be a happy service. I couldn't go and ruin it for everyone else. Instead I met Janey up with Callum and we exchanged Christmas presents. Callum and I then went bowling with Monica (Harry's classmate) and her mum Laura. We went to Shipley, the first and last time we had bowled there was with Harry in 2014, he was in his wheelchair, but in good spirits, it was a fun afternoon and felt like an achievement. Returning on Christmas Eve, was actually ok and we had a really lovely, fun time. We then had tea with friends, which then meant Callum was suitable tired and after leaving Santa and Rudolph their treats, he fell asleep surprisingly quickly! 
There is so much pressure on the build up to Christmas, people say it's just one day, but it isn't anymore, there is the school production; the buying of presents; the decorations; the buying of food (though I didn't have to do much of that this year!); the work party; etc, etc! It is lovely, but at the same time exhausting. I would see things that Harry would have liked, fleetingly you contemplate buying them, then reality hits. In all honesty, the weeks before Christmas become a blur, they become weeks to survive, a mountain to climb. The climb did feel a little easier this time, though there were days when the fog would set in, the ground would feel muddy and the effort to get through would be greater, taking its toll. 
I know family want to make plans for Christmas, overall this felt hard to commit to, particularly before Christmas, as said the mountain still needed to be climbed. Once Christmas had passed, it seemed easier to get through, the pressure gone, then the floods came to disrupt plans!  
We went to a friend's house party on the Sunday after Christmas. Many of Callum's friends were there whom he's known since he was a baby. However, Callum didn't want to watch 'Descipable Me', which is one of his favourite films, instead he chose to write a letter to Harry, he did not let me read it, but sealed it in an envelope and asked me to look after it. Another gulping moment, parralel feelings of happy and sad, I love the fact that Callum remembers his brother, but at the same time, tears sting my eyes and for a moment I don't know whether to cry. Callum however joins his friends and starts to play and I take a leaf out of his book, live in the moment and join my friends. 
So the letter joins a Christmas card, which Callum made at school for Harry. In it, Callum writes that he hopes Harry is having a merry time! I asked Callum what he wanted to do with the card, to which Callum said he wanted to attach the card to a balloon and send it to Harry. However, when given the chance to do this, Callum has chosen to keep the card.

I had a dream about Harry the other morning, I never dream about Harry. I can count on one hand how many times I have dreamt about him since he died. Having had trouble getting to sleep several nights in a row, I was in deep slumber at 8 am. I was having the best dream. It was windy and dark and I looked out of the spie whole in the front door and saw a dark figure in the distance, then a boy appeared, it was Harry, he ran to the door and I let him in. He was wearing shorts and a T-shirt and looked how he did in the summer before he died. He sat on my lap in the doorway and I cuddled him, something I couldn't do the weeks before he died, because he was in far too much pain. I cherished this cuddle. Harry was really happy, I asked him how he was and what heaven was like, to which he said it was good. I was so happy that he was happy! I knew he had to go back to heaven. Whilst he was with me I wanted to check his bottom, where he had, had several grade 5 pressure sores. Since he was running I assumed his bottom had healed, however he still had dressings on it, I was about to redress them as I told him I still had all the equipment and thought he could pop down and see me each time they needed changing! Then, Callum entered the room and I awoke! I really felt Harry was telling me that he was happy and ok. It did make me feel ok too! Later that day I told Callum that I had dreamt about Harry and how happy he was! I think this helped Callum too!

So, we made it through 2015. It was the year of the caravan! The caravan has enabled us to take off, without too much planning and periodically enjoy a few days together. To regroup as a a 3. To try and find our new 'normal'. With Paul working shifts, family time is special and a rarity. We also managed a trip abroad to Turkey and all inclusive was just the ticket, no planning, no decisions re restaurants etc. it was laid on a plate! Perfect! 

We will always feel a whole in our hearts. Time helps you learn to live with the pain. I belong to a closed facebook group for bereaved parents whom have lost kids to cancer. This group has members who are new to loss and those whom children died 10 plus years ago. What is evident is that, that MISS never goes. For some it actually gets worse. We will be approaching Harry's second anniversary of his passing soon. With regards many around us and for example work, allowances are no longer made. It is chin up and get on with it. This can be hard, as in terms of dealing with loss we are still in the early days of coming to terms with our loss of Harry; regrouping as a 3; redefining our lives and working out where we are going. Grief is a journey in itself, on top of life itself. Whatever highs and lows there are, grief is always lurking in the background, like a sudden gush of cold air. Happiness does come, laughter does happen, but equally that cold air is sneaky and can cause sudden unexpected shivers, enough to take the edge off and for reality to hit, maybe for brief seconds, sometimes longer. Sometimes it feels like an out of body experience, when these shivers happen and I look down at myself having fun and suddenly feel like I don't belong, suddenly I want to be home, alone, lost in my grief. We are learning to pull ourselves through, take the fun times and roll with it. However, it's a journey and always will be. So hello 2016, what have you got in store......