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.