I shed a lot of tears in the couple of weeks prior to Harry being diagnosed, then seem to hold it together through the initial round of meetings with consultants. Whether i went into work mode, as I do attend a lot of case conferences of others I don't know, but it was Paul's turn to shed the majority of tears in disbelief. I was focusing on keeping Harry happy and interested in things. Harry's grandparents - the Buckley side brought in some little lego they had been saving for him. Harry loved this and put together several of the little vehicles brought. However on 13.12.11 when my back was turned for a minute a little voice said that I have a piece of lego stuck up my nose! Well I thought Harry was joking, but sure in enough on closer inspection he had a small piece of orange lego stuck up his nose! Well the nurses thought I was joking when told!!! We did have a surgeon on stand by, but luckily with the help of his dad some hours later, he blew the piece of lego out! His friend Daniel who visited him that day, went to school thinking Harry was in hospital because he had a pieve of lego stuck up his nose. If only life had been that simple!
On admission to LGi we were on ward 51 in a luxurious single room, with ensuite and a big TV screen on the wall. Harry was keen for me to text daddy and tell him the TV was bigger than ours at home, as he knows daddy would love a bigger TV! The ensuite was a godsend, as Harry was not able to eat anything for over 24 hours on admission and screamed when I left him, I would sneak into the ensuite to eat and drink!
However the 4 star room was not to last. On Sunday 13.11.11 we were moved to the oncology ward where we were given a bay, to ourselves, but only for one night. Then it filled up and had a baby and a 2 year old. Going to sleep hearing a baby and a 2 year old vomit due to the side effects, was not easy, but the bed was far more comfortable than that on the previous ward. The sounds you get accustomed to are bizarre and really Harry ended up making the most noise over the next few days, as his pain following his biopsy was immense.
Well I had not anticipated on communal living again quite yet, perhaps when old and in residential care, but hey! The shared fridge, labeling everything etc. When I arrived I did not have any milk, tea or coffe, so the nicking of others stuff was very covert! I soon met someone else not prepared, with a recently diagnosed son, so willingly offered my goods!
Microwave meals here we come!
The showers are very badly designed with little slope into the drain and so I caused havoc on day 1 of being on the ward, whereby I flooded the corridor. Oh well, the glances of those clearing it up did not bother me, I had worse issues to face!
On tues 15th Nov, they had the results of a urine test which definatley diagnosed the tumour to be neuroblastoma. The plus side of this was that a drip could be removed from Harry as this was not applicable for neuroblastoma. Therefore Harry had his freedom, if only for one evening and made me have a huge smile as he negotiated the corridor of the ward on a little car, if only for 20 mins.
The next day he had his biopsy and ended up gaining nearly 3 kilos in weight in fluid. He was not in a good way Fri and his chemo started. His morphine was increased and NG tube fitted whilst I was not there. I could not face this as he would not be sedated. His dad was there, although intially said when told by Kate the nurse this would happen that they should wait till my return. She firmly said I had requested not to be there.
I went into Leeds centre on a mission to buy a new phone, as my pay and go phone was not up to the job of all the texts, phone calls needed. Bearing in mind 6 months ago I gave up on the idea of a new phone as the tarrifs, phones etc is mind blowing, I decided to buy one. My charger being dodgy for existing phone spurred me on.
However, having spent the best part of the week in hospital I was very institutionalised and was so not aware of it being Sat, Christmas, lights on in leeds etc and lost the plot! I so have such a new level of understanding of all those patients I am involved with in hospital whom have stays of several days/weeks then go home. It is overwhelming leaving the bubble that is hospital!
Anyhow I went to the O2 shop and burst into tears when asked why I needed an upgrade. However, when told I could not get the latest version of i phone on the particular tarrif I wanted I still had my wits to leave and search elsewhere! Having gone into my third shop and in the main street of Leeds with the coca cola truck, fake snow and lights I was beginning to lose my senses to emotions of sadness that Harry could not see all this Christmas festivities and when would he be able to. I needed a coffee shop but could not find the one I thought was where it used to be. The hussle and bustle of people was too great and I sought out a police car. They were probably rolling their sleaves up thinking here is a sect 36 on our hands, but luckily Dave Hirst new my husband and our situation. Having shed a few tears i sat in the back of the police car and managed to ring my husband, discuss the potential phone deal and get myself together enough to make the purchase. Without that moment I think I would have been a heap somewhere!
Well I had left the hospital promising Harry I would return with a new phone that had a talking cat on it. so that was the mission.
Mission completed and a smiling Harry on return with talking cat, the mission was worth it!
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