Monday, 11 February 2013

11.2.13 post antibody treatment!

Well Harry had no side effects from his final antobody treatment, which was brilliant. It meant he could be discharged Friday eve, when his antibody infusion finished. We did question this though, since following the end of his previous antibody treatment, the nurse assigned to Harry wanted to give him 24 hours of hydration, usually he has 12 hours hydration. The protocol was checked and it was agreed he could go home following 12 hours of hydration. This time we were being told that he needed none! It didn't make sense and seeing as we have seen 'cock ups' we wanted things double checked. The outcome was that since Harry had been drinking and  had no side effects from treatment, he could go home and have a full bag of overnight feed, which would continue to hydrate him, coupled with him drinking fluids orally. As usual though, the antibody treatment was not commenced as early as it should have been, this meant Harry finished his infusion just as a new shift started. This of course, caused delays. The computer system was down that day and so no printout dischage summary could be provided detailing what medicines Harry should take home. The nurse on the new shift was told by the nurse leaving the day shift, everything was present and correct. I'd left Paul with Harry, which enabled me to get Callum tucked up into bed, before Harry got home. It was 10pm when Harry was discharged and on arrival home he had most of his medicines missing! Since I am organisedd, luckily i always have a spare in stock. Harry particularly needed tablets to start on Monday, which we had none of. As those who know me can imagine, I blew my top with the hospital! Partly beacuse having Harry home, was suppossed to be a time of celebration, not chasing medicines. I felt I should have made sure everthing was organised when I left the hospital at 4pm, but I thought I'd trust the fact that we had been told that all Harry's take home medicines were as they should be waiting for him!
On the Saturday I pursue the matter, unfortuately it cannot be resolved until the Monday when a solid tumour consultant and an oncology pharmacist will be on duty!
I park the issue though, and enjoy the weekend, being reunited as a family again. Paul had the weekend off work and so we had a gathering at The social club we go to and have a toast to mark the end of antobody treament. On the Sunday we had a family lunch with both sets of grandparents. Harry is on amazing form and Callum is enjoying having his brother home.
Harry has been in school, just for the afternoon on Monday. The school had a day off wednesday for staff training, but the other 3 days he attended 10.30 - 3.15.
On Harry's day off, we met with a family wo have just moved to Otley in the morning, then went to Harlow Carr in the afternoon, with El, Natalie and Michael. It was very cold, but the children loved getting out and running about and getting wet and muddy in the puddles! Boys will be boys! I have a memebership card for Harlow Carr now. I had never beem until January, but think it is a great place! Its a Royal Horticultural Garden, with some great play areas for the children. I can't wait for the warmer waether and to have picnics there.
On the Thursday it was my birthday. Last year on my birthday Paul took Harry to LGI for invasive tests to see if his cancer had gone after his initial chemo. I had a hairdressers appointmnet, but for most of the day was fighting back tears, the fact Harry was undergoing invasive tests again, the unknown of where we stood with Harry's cancer, it was overwelming. Well the difference a year makes. This year, Harry went to school, Callum to nursery, Paul had booked annual leave and so we had a few hours child free! This enabled us to have a lovely walk and lunch together! Then I had a birthday tea with all my boys and my parents too! Harry and Callum were so excited about my birthday too. It was a great day!
I am getting used to our new pace of life, which is becoming as it used to be, lots of giddyness from the boys, the need to get them outdoors, particularly when daddy is on nights as he has been this last weekend. The boys are enjoying their scooters and becoming fast on them. Callum is like a kamikaze pilot, flying around, then catupulting in the air, landing with a big smile on his face!
We went to Otley park on Saturday and met up with Janey and her dog, The boys love Issachar - the dog. They loved following her into the stream, paddling, then getting very muddy and taking half the water intended for the river away in their wellies! Reminds me of my childhood days! One washing load later and a bath for the boys, all cleanliness was restored!
Well we have some tests dates, not all of them yet, but spread out well into march, so I guess we won't get the finla results till the end of that month. A while yet before we can be sure Harry is for now in the clear, not just of cancer, but in the clear of having anything malfunction as a result of all the drugs Harry has had to endure.
My mind is reflecting and thinking like mad at times of the last year. Often I park these thoughts and am enjoying having space for some long overdue me time. HOwever, end of treatment is a strange time, whereby emotions rock backwards and forwards, between being positive about the future, making plans, to fearing relapse, to reliving some of the events of the last 15 months and being angry about parts of Harry's treatement, believing things could have been dealt with in a much more senstive mannor. I may compile some letters, detailing how I think some parts really could have been managed better, some days I feel very strongly and others I park my issues! I have joined a Facebook group though that is looking at how end of treatment support coud be improved. I also have many thoughts on how more support could have been provided during our treatment and have emailed my thoughts to someone I hope can follow some ideas through. I know budgets are cut, staffing reduced, producing and managing any new initiatives is a big ask, but I know myself and some others would offer free input. So we will see. I am forever the social worker!!!!!!

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