I read an article yesterday that dark chocolate is good for you. And not in the traditional sense of moderation. The ‘Queen Mary University London’ study suggests that flavanols found in Dark chocolate can ward off heart disease and alzheimer’s when eaten in vast quantities, which is lucky as this Easter I have amassed enough to keep me going for a couple of months.
After my blood transfusion a week last Wednesday, I’ve spent the time relaxing lazily. I’m still fighting with dizziness and light headedness which can be frustratingly disorientating like being permanently drunk. My brain is also not up to scratch, I’m still struggling with easy and beginner settings on Soduko and Chess, but expect I’ll catch up with myself soon.
My tongue has appeared to have gone through a full regeneration after the initial roughness and blisters, it went black and then I had a spell of fresh baby tongue and it seems to be back to normal now. My sense of taste still brings up some surprises but I think it’s starting to return to normal.
It’s difficult to see for sure, but there’s no change in my hair meaning I didn’t lose it all, but it hasn’t started growing back yet. I have, however, noticed new growth on my face. My eyelashes have started to grow back (although my last remaining long eyelash fell out today!) and my beard seems to have started with adolescent and interestingly blond initial stage growth. I might give it a couple of weeks before I shave as it will be barely visible and only having shaved once in 3 months, I’m probably out of practice.
So it’s been just over 100 days and I’m nearly there- I have two more outpatient infusions of Rituximab the first being on the 10th. I’m not sure how long they will last but I gather a couple of hours, so they shouldn’t affect me much.
Looking back through photos from the end of last year, I barely recognise myself, I’ve got used to the Nosferatu look I’m rocking. I also have about 3 stone of weight to re-gain to get back to normal. I know it’s going to be hard work, but I’m looking forward to my first jog round the lake!
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.
I’ve cycled through the menus a few times now and while there is a reasonable amount of variety, I have never really expected any level of culinary excellence. Yesterday’s lunch, however, surprised even me.
Now admittedly, I got exactly what I ordered; and I’m not exactly a food critic, but as someone who currently can’t be bothered to eat at the best of times this presentation doesn’t exactly excite my appetite. Although I expect the average resident is fairly comfortable with the bland and ordinary, I’m pretty sure that without affecting cost and time, a small level of care and attention could vastly improve this meal in both nutritional and aesthetic values. Forgetting all the obvious omissions, I’d like to specifically raise your attention to the dessert. Apart from the choice of dish, if you’re going to drop a solitary slab of jelly in a bowl, it bears the question ‘why bother unwrapping it in the first place?’ As much as the idea of jelly appeared to be an interesting alternative, on reflection I think this would be enough to make Jamie Oliver quiver in his boots! With this in mind, the news that I can go home for a few days is a huge relief. I have a bit of a concern about my headache and how I’m going to cope with the journey, but to be honest if I have to bear that for forty minutes, the comfort of my own home and real food is worth the pain. The doctor decided that the second temperature was just a blip and had finished all my antibiotics and even reduced my other tablets to a small handful. I need to get a district nurse to visit and do blood tests and re-dress my Hickman line while I’m home and I’ll probably have to learn how to climb stairs again, but I’m looking forward to the short break of normality. Although still falling out, my hair loss seems to have slowed its progress so rather than shaving it off as is standard, I think I’m going to see what happens. If I look a mess for a few weeks in aid of science who cares! I’ve been taking a pic each morning the first few are below:
Although I try and take pride in my appearance, I would tend not to regard myself as vain or in any way precious about my appearance. In this world of self imagery, high speed transactions and 140 character assassinations, the way we look affects the way people feel about us.
In my mind, there is little relationship between hair style and personality but perhaps in some way it does betray personal style and taste. I thought I would be prepared for hair loss, in fact it was the only symptom the doctors were sure about, but even so, watching your hair fall out in clumps as it has over the last 48 hours does bring with it a certain level of anxiety and self-reflection.
Otherwise the last few days have been fairly un-eventful. I’m now waiting for all my platelets and white blood cells to restore to acceptable levels. It was also confirmed from a swab of my throat that I had contracted ‘influenza A’ – incidentally the variant of flu that is not covered in this years’ flu jab and which the chap in the cubical next to me also had (we were sharing a bathroom, so I was less surprised than the nurses at this outcome!) I seem to have coped fairly well with it though, apart from a sore throat and generally feeling unwell, I can say I’ve had much worse with a fully functioning immune system, although I expect the course of intravenous antibiotics and tamiflu probably helped.
I also reached the end of my course of hydration. The relief from the beeping and clicking of the pumps and having to unplug and wheel around the stand each time I went to the toilet or shower was a greater relief than I had expected.
It’s surprising how used to performing a task regularly you get (especially when it’s every 2 hours for 5 days) that you forget how annoying and restricting the task in fact is. I’m sure I’ll re-asses some of my other daily habits when I return to normality!