I’ve spent a few days at home now and adjusting to reality has become more difficult than I thought. Hindered primarily by my headache which while improving, is still a frustrating brake on my daily activities.
Day 24 – release day
I was collected from the hospital by my Dad who had to wait for a couple of hours while the nurses collated my notes and bags of tablets. Initially I was told that my consultant would like to see me before I left but this didn’t happen. Incidentally, I haven’t seen her since the 23rd December and have only been in contact with the on call doctors. I think therefore that she has been avoiding me as she knows that I will have built up a huge list of questions for her.
On the way home, I managed to mitigate my headache slightly by folding the chair back as far as it would go. It gave the journey an interesting viewing angle!
Having climbed the stairs for the first time in a while, I crashed out and didn’t do much beyond sleeping.
I spent Friday at home watching telly (I’d built up a library of TV to catch up on) and sleeping. It felt strange being at home with nothing to do, and although there were chores I could have picked up on, just walking round the house was enough to wear me out so I decided to take it easy. Luckily for me, Liz has been keeping on top of most things so I don’t have to; but I have a strange desire to get back to fitness so I can help out.
First Weekend home
Without any plans beyond relaxing, it seems that I’ve started to regress into childhood. My primary activities have included: completing ‘plants vs zombies’ on my phone, playing ‘Halo’ on my X-box and building a ‘Lego city cargo plane’ which my brother bought me for Christmas. I had a couple of friends pop round for a cup of tea and catch up which was nice; although I felt a little guilty on receiving a text from one of them saying ‘I’ve just come round to see you in Worcester, but you’re not here!’ Although on reflection, he should probably have checked my location first!
By Sunday I’d managed to increase my standing stamina enough to walk round to my friends’ house for dinner. I wore a pair of jeans which were tight in November and are now bunched up like a sack of potatoes around my waist (my favourite belt is now back in the drawer as it has too few holes, so I’ve had to resort to a fabric friction belt) On arrival, I had to lie down on the sofa and again after dinner which felt somewhat unsociable, but I think they understood. It was nice to fit a little sense of normality into my weekend.
Day 28 – the start of Week 5
It feels like a lot longer than 4 weeks since the beginning of my Chemo, but I expect this is partly due to counting hours in the ward. I had a district nurse visit in the morning to flush my line and take a blood sample. Having been told that I’d get a call with an appointment time, the shock awakening of a knock at the door took me by surprise, so she had to greet me un-showered and wearing little beyond my dressing gown! After a bit of a chit chat, she realised she didn’t have enough syringes for a double lumen line, so she left and said there would be another nurse round in the afternoon. Looking at the X-box controllers and Lego lying round the floor, they both asked If I had kids and were surprised to find out that I’m in fact a 33 year old child myself.
Today I had an outpatient meeting with my consultant. Having bombarded her with (predominantly scientific questions) we decided that despite my headache I’m ready to crack on with phase 2 treatment. She said that I probably need to have my spine injections restarted but she’d get a neuro-specialist to come and see me beforehand to check me over.
I’m fairly symptom free now. I have a long way to go to get back to fighting fit, but besides my headache, I feel fine. My hair is still falling out, but slowly now with little change to my current appearance of baby head. I have noticed, however in washing my face, that my beard is falling out. I gave up shaving a few days ago and although it is growing, it’s much slower than normal and at first glance, my 10 days beard, looks like about 3 days growth (mainly due to the thinning of it’s mass) my throat is fine, mouth is healthy and even my digestive system seems to be fully functioning, so I’m prepared, if not looking forward to getting booked back in to hospital tomorrow.