Monday, 7 December 2015
Grief can feel like a painful chronic disease. You have good days, weeks then terrible crippling days or weeks. There are the special days where you know that grief will consume you and the build up to these days can be worse than the actual day itself. Then there are days you think you will be ok, but suddenly, wham, grief is like a tidal wave and because you hadn't prepared yourself it seems worse.
Today was one of those days.
I went to church and completely forgot about it being a baptism. There was no Sunday school, but lots of children. Lots of children from babies to toddlers. Lots of children that gave me flashbacks of memories of being in church with Harry, when he was the ages of the children I saw. I remember running after him, watching him run. I remember him being months old and wriggling and not being that placid child! Full of spirit.
I was consumed by grief and had to take some time out in the toilet. I was going to get Callum and go, but he was playing in the back room with a friend. He was playing with Lego, not any Lego, but police lego, Harry's favourite! The toy he got 4 years ago at Christmas following his diagnosis of cancer. More flashbacks. Then a lady came in with her 3 year old and we were talking about toys and children and I was saying how Callum had playmobil age 2, which sounds young, but I wanted to scream it was because his older brother loved it too, but who wants to know about my child not on this earth anymore. Maybe they do, but to go into it creates more pain. Then the child Callum was playing with started saying that Santa does not exist and I tried to distract the conversation by saying we went to see the real Santa in Lapland. Then the mother sat their, started asking questions about it and I nearly said we went with the charity 'make a wish upon a star' because Harry was terminally ill, but I didn 't. I said how magical it was, which it really was!
What I am trying to get across is that normal life brings up crippling, gulping moments nearly everyday. Most of the time I think inside and manage to the sustain the mask during these moments. However, today I had to retreat to the toilet and shed a few tears. Grief hurt so much, I couldn't keep the mask on. However, nobody knew, we don 't hold up a big sign saying I have had a moment of heart wrenching grief. We just get on with life.
Today was also the Victorian Fair. I remember so clearly taking Harry and Callum 4 years ago. Out first family outing post Harry being discharged following 2 rounds of chemo. Harry was weak and in a wheelchair. I remember many other Victorian fairs too, I remember going when Callum was only weeks old and Harry was age 2.
Again so many memories.
We started decorating the house with Christmas decorations today and I came across some handmade ones that Harry did when he was in hospital this time 3 years ago. The pictures of that day came up on my facebook memories. Beautiful pictures, which I will share with you. But again flashbacks.
All I want for Christmas is to be a family of 4 again, to have Harry back.
December is so hard. I can just about still say, not that I say it out loud, but I do in my head, that Harry died last year, soon I will be saying he died in 2014 or 2 years ago. Suddenly Harry is the past. His peers are growing so big now.
However, to me and my family and very close friends, he will never be in the past. He will always be my son, Callum's brother and a grand son.
Grief is so hard, yet so unacknowledged. It is the elephant in the room. Nobody quite knows how to address it, so most don't. But I truly thank those that do.
I am also finding the death of a counsellor at candlelighters has hit me harder than I thought it would. He died suddenly age 52. I spilled my heart out to him in April and always knew I could go back and he'd know my story. My parents saw him regularly too, so he knew lots about us. I hadn't realised how much it meant to have a door I could open and spill out a bit more, even if I chose not to. The option was there and this provided a huge crutch. An unexpected crutch. Now it has gone I realise how much that door meant to me. Candlelighters has got another counsellor, but to start the story from scratch again in itself is exhausting!
Last week Callum brought a reading book home titled 'Fly High'. It was the last reading book Harry ever read. Such a poignant title. Again, it brought back memories. I shared these with Callum too.
Life remains a rollercoaster of feelings. I have had some really lovely times recently too. Such as going to Prague with the girls and going to my friend's 40 th party yesterday was also a happy day. I am a positive person and strive on in life. However, it is hard not to let the flashbacks take over and be consuming at times.
What I have learnt though is that life is for living. Grasp opportunities, really laugh at something, smile at the small things and treasure them.
Sunday, 8 November 2015
This is always a hard time of year for us. This time 4 years ago I knew something was wrong with Harry. We had been told he had a virus, having been to AGH twice for overnight stays, I felt like I was being labelled as the neurotic mother. I was trying hard to sit tight and ride out this virus as I had been told that it could take some weeks even months to pass!
Though witnessing my Harry so lifeless and in pain was the hardest thing ever. I felt helpless. The calpol and intermittent ibuprofen was not hitting the spot. Virus or no virus I felt Harry had been left to suffer, no one really caring except myself as I was off work, managing him 24/7.
As the week progressed this time 4 years I started investigating how to get a private ultrasound as I needed more clarity on what was wrong with Harry and needed to know we had ruled everything out.
On 11.11.11 Harry was more lifeless than the previous days so I took him in my arms to see the G.P. and she was shocked to see Harry in the state he was. Finally we were taken seriously and went home to pack for a stay in LGI. On the 12.11.11 Harry had 2 ultrasounds at LGI and the massive tumour was identified in his abdomen. Cancer was discussed as the most probable diagnosis.
I have been asked how I felt when I heard those words. Well initially I was relieved at being taken seriously and I wasn't neurotic. However, I did not really know what it all meant and how it would affect our lives. The week that followed enlightened me as we were quickly transferred onto the oncology ward.
Harry had several tests that week that required anaesthetics, starvation, blood tests and a biopsy which left him with a 9 inch scar. He had his first blood transfusion, started chemo as he was slipping through our fingers and had his first nasal gastric tube fitted!
This was a taster as to how our lives would be for the next 2.5 years! As that first week unfolded I realised the enormity of what neuroblastoma cancer is and the effect it would have not only on Harry, but all of us.
The enormity did not hit me until Saturday 18 th November, when I ventured into Leeds to get a new mobile phone. I'd forgotten Christmas was on thd horizon and seeing the coca cola lorry with the fake snow, the shops with all their festivity and all the people frantically shopping for Christmas, I felt like I was stood still looking in on a world I did not belong to. My fear was that Harry would not make Christmas. I nearly fell in a crumpled heap in the entrance of marks and spencer, but managed to knock onthe window of a nearby police car and sat in the back for a few moments to gather myself back together! From that moment it was sink or swim and I chose swim.
Now we do not have Harry on this earth with us I still choose swim. Though do have some sinking days, particularly this time of year.
'Take a break' magazine are going to feature a story in their next edition of Harry's illness from Callum 's perspective. I have heard the story verbally and it is in 'take a break style' so a little twee in places, but overall I feel it highlights the plight of siblings and details Harry's treatment and relapse. In light of the story that is unfolding on Coronation street and the decision to play down the neuroblastoma story of Hope, since the cancer has not spread, which is not typical of those diagnosed with neuroblastoma, I hope our story is read by many and the true depiction of what can happen is understood further.
I also want to share a very useful arcticle another bereaved parent shared, as it depicts an accurate analysis of the life of a bereaved parent.
By Angela Millar
Thursday, 24 September 2015
Tuesday, 22 September 2015
Wow I can't believe how 8 years ago how I felt so ecstaticly happy to have my longed for baby in my arms. How beautiful the world was and now, well we will always have a piece of our heart missing. Life never quite so beautiful.
I wonder what Harry would look like now, I wonder what he would have wanted for his birthday, I wonder what kind of cake he would have wanted, I wander what kind of party he would have had, I wonder............
That is all we can do, wonder.
Harry's much loved and cherished hamster - Joey, died the night before his birthday. How timely and poignant. When I broke the news to Callum he was very sad, we all felt sad, because Joey was such a link to Harry, but age just over 2 Joey had been struggling with life, his mobility was very poor, he lost interest in his food, just like Harry did.
Trying to put a positive spin on things I told Callum that Harry had the best birthday present ever, that Joey was now with him in heaven.
To celebrate Harry's birthday we bought 3 balloons, to take up to his tree on the Chevin and we had finally got a plaque to attach to his bench. The day started with heavy rain, but fortunately brightened up into a beautiful day and the view from The Chevin was awesome as always! We had lunch first in the cafe and being the heritage weekend there were activities going on up at The White House, which enhanced the day. We attached one ballon to the bench and let the other 2 go. A very moving and touching time, to see the balloons float away.
We returned home for cake, chosen by Callum and he blew out the candle with the number 8 on. Both sets of grandparents joined us.
We buried Joey in the garden. Callum wanted to cremate him, but burning a wee hamster, well decided it was just not appropriate! Harry was cremated so I understood where he was coming from. So Joey has a little cross, to mark his burial ground. Like Harry, Joey will never be forgotten and has his legacy too in the form of the book 'Runaway Joey!'
So here we are 18 months of living without Harry. Callum talks lots about Harry, gets upset from time to time, but, Harry remains a part of our family and always will.
Our holiday to North Wales was great and being on a smallish caravan site meant Callum could go off and play with the other 5 year olds on the site, which was lovely to see. Though Callum did exclaim during that holiday that he wanted Father Christmas to bring him another brother, called Harry! So the conversation then leads to the parameters of Father Christmas's powers to grant wishes!
A piece of our hearts will always be missing, till the day we die. We try and get on with life and by and large we do, but behind that smile is always a feeling of incompleteness.
I think keeping busy is what many grieving parents do, as the moment any of us stand still the overwhelming feelings of grief come, the flashbacks, the memories and ultimately the sadness.
I have just had 2 people from Look North here, to do an interview, to be shown tonight in conjunction with Candlelighters, to feature our journey and also focus on the statistics of childhood cancer. I know what I said will be edited into seconds and they will show footage of Harry too. But I hope it can raise awareness that childhood cancer exists, that it comes and invades your whole family, not just the child fighting to survive. The reason I do these things is because cancer affects the rest of our lives. The flashbacks will always be there, the grief, the pain of living without Harry. They don't go away, regardless of how hard we try. So I figure I might as well use our experience to educate and help others. Most of all it keeps Harry's memory alive. Harry though not on this earth anymore, through me, can still make a difference!
Monday, 7 September 2015
I haven't had time to write on here these last few months. I've been completing a university module for work, to qualify me as a best interest assessor under the mental capacity act, just handed it in last week! Fingers crossed!
I have also been busy getting a power point presentation ready. I am lucky to have a friend Lynne Rhodes-Holme whom met me for the first time in April 2012, giving a presentation to Otley Rotary club only hours after Harry's 9 hour op to remove his tumour, help set up 'Harry's legacy' which has been launched in conjunction with the Rotary club to raise money for Candlelighters. I gave my first presentation under this umbrella a few weeks ago to Leeds Rotary club, which is in its centenieth year and they have chosen to support candlelighters for their charity of the year. They gave £5000 to Harry's legacy which we are truly grateful for, in exchange for the presentation I gave with Lynne Rhodes- Holmes! Hopefully there will be lots more opportunities to raise money over this next year!
We have also had a fab summer with Callum during the 6.5 week hols! Will write more over next week, but thought I'd share my picture of Callum's first day back at school today. Callum has just started year 1, the year that harry is in the picture and the last year he entered. Feels strange to think that at the end of this school year, Callum will be older then Harry ever was on this earth. Though Harry will always be Callum's older brother. He talks lots about Harry. He cries about his loss of harry too. 2 miles up a hill in Kettlewell he sobbed his heart out for Harry and said if harry was still alive and poorly, then he would give the money he's been saving up, to help make Harry better. We all had tears running down our cheeks and shared a group hug! Just because Callum is young, it doesn't mean he is too young to grieve and have that big MISS that we all feel.
It is Harry's 8 th birthday on Saturday too, so an emotional week. I remember 8 years ago, feeling so excited about the prospect of meeting our baby, harry was born 2 weeks early, so my wait wasn't long!
I also remember this time 4 years ago. Harry had, had night sweats and had been waking up the night, then seemed ok for his birthday. Then he seemed to be getting withdrawn, then he had intermittent pains in his legs, abdomen and constant temperatures. I remember going out of my mind with anxiety as Harry turned from our gregarious boy into a lifeless being laid out on our sofa.
September is childhood cancer awareness month. Gold is the colour for childhood cancer.
A poem, written by a cancer mum. The words are so true. Cancer is so horrible, most don't want to imagine, but sadly it was our reality and the reality of too many.
Thursday, 11 June 2015
So we have reached June. The month summer officially starts. I remember this month 3 years ago in 2012, the month Harry was in full swing of high dose chemotherapy and the full effects were taking shape in the form of infections due to rock bottom immunity, followed by VOD, whereby Harry was very closely monitored, his fluid intake reduced to only a few ml as his kidneys could not take more. Intensive care was a high possibility, but fortunately never became a reality. The same month saw Harry improve to the point he could be discharged home. Final touches were also being made to our plans for Harry's Summer Ball, which took place in July 2012.
At that point we greatly valued the fact that candlelighters funded holidays. Something we would never have booked in advance if at all, as even when Harry was discharged he was still having regular platelet and red blood transfusions. The risk of infections remained high and thus so was a re admission to hospital. With myself on reduced pay due to having exceeded my 6 months full sick pay, a reduced income meant, little left for holidays.
We also had no idea how long Harry was going to be in hospital during high dose chemo, so with timescales unknown, holidays as said was not something we could book. Therefore having a week booked for July 7 th in Filey, in a candlelighters caravan was the carrot all the way through high dose chemo. A holiday, that could be cancelled by us if events took over and Harry was too unwell to make it, without leaving us with a whole in our pockets.
Thankfully we made it, a valuable time to regroup as a family of 4, before what we know now was an onslaught of side effects from radiotherapy. As I've said before, creating happy memories in a place far away from hospital, keeps you going through those very dark days, where the fog is so thick and the mud so deep.
Fast forward to this June, 3 years on and just over a year since Harry died. We are on a flight on our way home from Turkey. Holidaying as a family of 3, in a country we have never visited before, doing it all inclusive style, another new and making new memories. We haven't holidayed abroad since Harry was age 1, when we went to Nice in France. When pregnant with Callum we didn't want to go abroad, it felt too much hassle and Harry was a wriggler. I remember age 1 the journey home felt like a nightmare. We were sat next to a man reading a broadsheet paper and Harry's wriggling kept disturbing him. I took him to the toilet to stretch our legs and to do something, but deeply regretted this when his wriggling and grabbing meant he broke the soap dispenser. I have thought of this much today on our flight home and the memory made me smile when I went to the toilet mid flight. We are flying with Jet 2 just as we did back then.
So having Callum make our family complete, but being more of wriggler than Harry, trips abroad on a plane felt far too stressful. I remember going on a train ride from Whitby to Pickering and back when Callum was just 10 months and Harry was just 3. By that time Harry was manageable and enthusiastic about the train ride, Callum, however would not sit still. Having discovered he could walk age 8 1/2 months, he just wanted to be on his feet and I duty fully followed!
By the time Harry was 4 and Callum was 2, we started to think about holidays abroad, though having discovered centre parcs, we had found a new way to holiday in England. Though replicating this in France or holland sounded inviting.
However as you all know Harry was diagnosed with cancer just after turning 4 and holidays abroad were put to the back of our minds. We had to fight to merely survive.
As you all know we had many adventures with Harry in the months that followed his confirmation of relapse. Though we had many smiles, laughs and memories to cherish, it was exhausting. Harry was always up and down. His pain took a cocktail of drugs to manage and the levels varied from day to day or week to week. Support was incredibly minimal. It felt like the hospital had given up, tossed us to one side as Harry wasn't going to live. It had felt like they had shouted a very loud 'NEXT'.
We were in an unknown world. We had been told Harry had only months to live and so set about creating as many memories as possible. The rate at which we did things makes me dizzy to think about now. You get a strength to continue that you never knew you had.
However, even we could not continue at the rate we were and so when September 2013 came and Harry entered year 1, a milestone only weeks earlier we were told by the hospice doctors that Harry wouldn't make, we took time to reflect. We felt we had to enter into a new phase of normal. One where we knew Harry was going to die, when, we had no idea, but we needed some sort of routine for the boys and us. We could see that Callum was being spoilt too. He was going to live and we needed him to grow up a lovely sensitive boy, not one who got what ever he wanted or got treat after treat. After all normal life is not like that. Big days out need to be a reward, not an everyday occurrence. Therefore our adventures slowed down. Harry went to school, Callum to nursery and I and Paul remained off work. Life was still unpredictable with Harry and as much as we were creating a routine, it did vary depending on what type of a day Harry was having. He was on fentanyl pain relief patches which changed to buprenorphine, which suited him better, meant he wasn't so drowsy and sick.
Life ticked on in September 2013, but then Harry started limping again, which we found out at the end of October was due to a fractured femur, not the disease! However, on the same day we found out harry had a fracture, we also learnt that we had the opportunity as a family of 4 to go to Lapland for the day in December and that became the next carrot!
So Lapland was the last big day out we had, we got to go abroad if only for the day, but a day we will remember for the rest of our lives. It was a magical, fun packed day.
So, back to our holiday in Turkey! A holiday, so far removed from our previous adventures. A relaxing holiday. A holiday as a family of 3. I know we have come along way in the last year plus, as I know we couldn't have had this holiday last year and enjoyed it. Yes, we missed Harry every day and there was one evening in particular when we had a la carte in the quiet restaurant, where Paul and I looked at each other and commented on the fact that we had an empty chair. This had not been so glaring in the buffet restaurant with the hussle and bussle, but somehow it really mattered sat there that night.
For us at this time in our lives, the all inclusive aspect was perfect. We felt looked after, no meals to cook, not even the stress of deciding where to eat and where Callum would find something he would like too. Food was available all day, from doughnuts, to pancakes, to ice cream to more healthy options, to cocktails and beer and for Callum a constant supply of slushies and chocolate milkshakes!
Our hotel had private access to the beach, where food and drinks were also available.
We certainly chilled out. Spent most days at the pool and then the beach! We did manage to Practise some bartering in the town of Antalya where Callum even got some light up plastic toy for free!
The hotel had a small fairground (all included too) and Callum was made up that his feet reached the pedals and so he could drive his own car and we could each have a car and enjoy some frivolous fun!
The holiday was so needed and helped us regroup as a 3. Callum had so much fun. Yes, he talked about Harry, he regularly does, such as when it will be Harry's birthday in September he wants to send Harry something piratie! So we will have to think of something that can be attached to a balloon!
Being on holiday also means that there will always be those awkward times when you talk to someone new and you know that the conversation will go at some point towards children. There was one couple we bumped into a few times and when the mum and me were sat by the pool, she asked me if Callum was my only child and I said yes, then she asked if I would have more, at which point I told the truth and explained that Callum had an older brother, but he died last year from cancer. I went on to say what a handful the boys were when they were younger being born close together, whereas she had a big age gap between her 2. I guess after dropping the 'bombshell' a natural conversation flowed!
We became friends with another couple. They were younger than us. On the last night when the conversation was about the age we were when we had children, eventually it seemed the right thing to mention we actually had 2 children. It was strange as the couple said, we had talked of children, but obviously only Callum was with us and our 'confession' explained the use of the word children!
It is strange talking to new people and people whom you meet for a short time. Paul felt perhaps we should keep a lid on our chest of woe, but it depends on the situation. It is strange having conversations with people and feeling like you miss out chunks to avoid having to say that we had a child whom died of cancer.
However, I feel I am better at dealing with this and more able to mention Harry and talk about him to others in a more natural way. I hope anyway!
So back to work, back to school for Callum, however thd summer hols are on the horizon and hopefully we will get away for more adventures in our caravan!