Thursday, 24 November 2011


Well we were finally moved to our own bay at 11.15pm last night. In fact back to the first bed we were in when we arrived on this ward on 13.11.11. The night was not as quiet as anticipated due to Harry doing more poos through the night and me the new nurse Sarah had to come to his rescue!! Well at least we were not disturbing others.
I have to say that having moved beds a couple of times already I have found myself entering the wrong room and then dawning on me that it is the wrong child there! I am only emotionally all over the place, let alone all those people I deal with in hospital in relation to my job, whom have dementia and are moved from different bays and wards several times during their stays. I really understand now how they get disorientated easily!!!
I have also a recognition on a higher level through experience, just how many different people do get involved in one persons care. The nurses, the doctors, the student doctor, more nurses, the dietician, the social worker, then the chaplain, all by 11am and all I wanted this am was to give Harry a bath. It was lunch time by the time he was a clean boy again. Then he was that tired from being prodded, talked to and bathed he fell asleep before eating his lunch!
The one thing I can so highly commend about the oncology ward though is the cleanliness. The floor is cleaner than my plates at home, I am sure. When we left the bay we were in last night a team of cleaners came to wipe down every nook and crany and even the curtains around the bay were taken down to be laundered. The fact that we were isolated as soon as strategically possible was an excellant protacol. I can't say too much as I am not sure who is reading this, but I feel if this level of detail to cleaning was only able to be delivered to every single ward in the country for what ever age group or diagnosis then I am sure infection control would be amazingly controlled!!!!
Harry has been very tired today and not interested in anything apart from watching the TV. He has also been sick a couple of times, which could be side affects to his chemo, not tolerating his feed through his NG tube or just a bug. More likley the first two though.
The down side to being isolated is that Harry is not allowed out of his room, apart from to have a bath. Therefore discussions with other parents has been minimal. Harry has been very clingy to me and I was only able to escape for 40 mins when he fell asleep and Grandma and Grandad were there. I had a look around the German market, which was a lovely diversion if only brief.
Since Callum has been in nursery the last 2 days and chicken pox is going round Paul has stayed at home with Callum this afternoon, for fear he may be in the early stages of chicken pox and spread the virus on the ward, which can be a problem. Chemo wipes out previous built up immunities and so if a child on chemo comes into contact with someone with chicken pox they need an injection to boost their immunity. Just another added complication as Callum has not had chicken pox yet, in some ways if he gets it whilst Harry is in hospital it will save separating them at a later point when Harry is home. The conundrums!
Thanks though to El who took Callum to have his hair cut today, I haven't seen the result but an amazing job! It usually takes 2 of us, one to hold his hands from hitting you and one to hold his head still! Thanks for looking after him too on your child free morning!
The other thing I was going to comment on today was the services, the people now interested cos Harry has cancer. When Harry had a 'virus' nobody wanted to know me or offer help so easily. The virus if it had been, could have gone on for weeks and I am sure I would have been told, he'll get better see how he is in a couple of weeks. I rang the Health visiting team when Harry had the 'virus' trying to find a source of support. I was told to get his nursery involved in terms of addressing my issues around him being withdrawn and generally told or it seemed to me to see how he goes. Now it seems a different story and the Health Visiting Team are getting in contact with me and seem to be there to offer support where they can. Resources are so limited that I am aware they are saved and targeted at specifics of which cancer support is one. But there are many, many people whom fall between diagnosis and are following that winding path of not knowing quite how to get the services and support needed. I am so grateful though that we are within this massive team of support on the oncology ward and the wider charity groups and support networks as we will need it all.
Tomorrow we should get the rest of Harry's test results back and I pray that they are as expected and no real surprises as to where the cancer has spread to.

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