Hi all.
I am currently surrounded by noise. Twin related play noise. So it is good but I wish they would quieten a little, I'm trying to listen about the slow loris' on the telly.
I have a spare five minutes so I thought I would do a quick blog, about life back home. Life not in the hospital.
Hospital's have a timetable which you have to fit into. Breakfast at around 7am followed by first pill run, Lunch around 1pm followed again by tablet run then tea/dinner and yet another tablet run. Punctuated in between by observations i.e. blood pressure, pulse check and temp check. But other than that the time is your own. Books/TV/crosswords etc are therefore essential although I found that I tended to nap. A lot.
At home life is much more chaotic. Breakfast seems to last anywhere from 8am until 11 am, then maybe some lunch but definitely a snack, then eat as when required until tea/dinner until around 5-7pm. I obviously at various times in between take whatever medication I need to. All of this is carried out around two busy, constant and noisy three year olds with occasional requests from the 7 years and 12 year old. Mostly for food or drink. We also need to fit in housework/bathing children/dressing and undressing of children etc. Children create an awful lot of work. I forgot.
You can see why I wanted to be at home?
I lost a very dear friend on Tuesday to the Bastard. She also had her own version of the Bastard. She owned it and called it Brenda. She refused every day to give in to the Bastard so it took her in sleep. Stealth. The Bastard. It's funny because I call her my friend, and she very definitely was, but we never actually met in real life. We only ever conducted our friendship online. I am very sad that we never actually got round to getting together like we had planned a few times. She messaged me the day I joined the cancer group on Facebook. She wanted to help me. Help me understand the very massive enormity of shit storm we were about to enter. She was a single mum to one lad. We talked late into night, fuelled by steroids and snacks (steroids make you snack). She knew when I needed a kick up the bum and needed some positivity. What will I do now? When I need that injection of positivity? Who will I turn to when I want to talk cancer? The symptoms and the thoughts?
I had been keeping a candle for a special occasion. Now is that time and it has burning in the evenings since Tuesday.
I've had another visit from another very special friend, really she is a surrogate sister. Her children and ours just got along from the moment she arrived allowing us to just sit and put the world to rights. Until Thursday when I had no choice but to go and waste an entire day in hospital as I had a high temp signalling yet another infection. We finished the visit though with me back home.
I've been checking and ordering medication and now nephrostomy supplies ready for our holiday. Yes. We are being brave and trying to go away for five days as a family for a break. It is within an hours drive of the hospital though so not that brave perhaps? But I was working on the basis that a change of scenery might reinvigorate us all a bit.
I now have enough antibiotics to cover me until we return thanks to my unlooked for wasted day on Thursday. Had a bit of a nightmare trying to source fresh nephrostomy collars and bags though. With the district nurse not answering her phone and no real obvious way of being able to get the supplies myself I called my angel at Team Verrico. The wonderful Mrs Mac (we'll call her that) had sourced and ordered enough supplies for the holiday and more within ten minutes of my desperate plea. They really are wonderful.
In terms of cancer, it has mostly been dealing with the nasty side effects, they are a little TMI so if your of a delicate composition or just don't like bodily functions skip the next paragraph.
I've been so bunged up since I had my stent so rudely removed that I was worried. Is it possible to eat for an entire week without going to the toilet for a number 2? Surely a person might explode? Another nasty side effect of this disease is passing nasty stuff from the urethra, very yucky and worrying. I worry about all the side effects in case they are not normal and what if...? I have decided I need Dr Oncologist to move in with us just so he can tell me that all this 'stuff' is normal and to be expected or so he can prescribe stuff at the drop of a hat.
In terms of pain it's not been too bad, which is good but I do seem to have an almost permanent twitch which I don't like. My mobility has not been too bad either but I did spend the afternoon in the wheelchair when we took the children out to a museum this week. I am very sad that I need to use one but I guess it's that or sit at home all day. Not really a choice is it?
I drove Luigi!!! I actually drove him. It made me so happy. We took him to the coast so we could have a celebratory afternoon tea together (thanks to Mr H's Dad's babysitting powers). We sat chatting, scoffing cake whilst watching the world go by. I love that. People watching. Makes me happy.
OK. I only intended a short blog but it's got a bit bigger than I expected so I'll leave it there for now.
We are going to watch Megamind while I eat the cakes I didn't eat yesterday at the afternoon tea.....yes I had a doggy bag. It's normal isn't it?
Laters.
