I hope this finds you all well and making the most of the sunshine. Predictably, the good old general public has gone from loving the sunshine to complaining incessantly about the heat and moaning about about sunburn. Our local rozzers must be sick and tired of having to come to our estate to sort of disputes between some of our finest oxygen thieves......Whoah, scrub that weather talk.
It is now a week later and the weather has reverted back to the typical insipid August mizzle and high winds.
I initially thought I'd make this blog all sunshine and light and unicorns farting rainbows, but I think I'd rather be honest.
I'd almost finished the blog before we had a slight misshap on Friday. After having a quiet week, recovering from our holiday and seeing my doctor and going in for a couple assessments at the local surgery, we thought we'd go and watch the new Spike Lee movie, BlacKkKlansman. As we were pootling along in our little Sh*t-Ron (Citroen) Berlingo heading to the consumer vortex that is Southside Shopping Centre, I heard a loud snap in the back of my chair, followed by a wave of intense pain.
Once we stopped, Jay told me it looked like one of the vertical tubes that holds up the back of chair had become dislodged and she tried to fix it and we carried on. When I was buying the cinema tickets, it occured to me that I couldn't get anywhere near the counter as I was leaning back so much. When Jay arrived with the cinema snacks, we dashed into the bathroom to have a proper look. Oh the horror. The whole right tube had sheared off and was in pieces.
This may sound insignificant, but I have no balance and cannot hold myself upright, as my paralysis is from my nipple-line and below. This means I constantly feel unbalanced and ordinarily I really have to lean back into the seat to sight upright. So having nothing behind me was pretty terrifying as I thought I was going to fall out and break my neck. Jay pushed me against the wall in the indoor car park, and I balanced against the wall while she grabbed the car. Some guy told me to stop smoking in the indoor car-park and I may have given him my first sucessful death stare in 39 years, as he departed pretty sharpish.
In times of crisis, we both seem to get very calm and focused and just deal with the problem. I am grateful for this attitude and it means we don't freak out and panic. We decided to use the winch in the Sh*t-Ron for the first time ever to get me into the vehicle safely and had a slightly fraught journey home. If my chair had broken in Yorkshire we'd have been truly up sh*t-creek, 300 miles from home with a tetchy cripple with an unusable chair, a stressed wife with an unusable husband and a 7 hour car journey to look forward to. Thankfully the chair broke 2 miles from home.
Of course, the worst part was missing the bloody fillllim. I now have a broken chair and I am using my old chair which is proving to be a four-wheeled torture chamber, as it is re-awakening parts of my back that have been undisturbed for 4 or 5 years. The chair has a much lower back-rest than the current broken chair and seems to rub and press against every bit of my back that hurts.What has not helped is that I have discovered I have gained 32kgs since the doctors put me back on Dexamethasone steroids back in October last year. It is also wider so if anyone wants a DNA sample from me I have left most of my knuckle skin on the door frames in our flat. It is amazing what a difference an extra couple of centimetres makes in a tiny flat.
Oh well, we will endeavour to get the chair sorted asap and hopefully I'll be back on my feet/wheels in no time.
Four days before our very expensive trip to West Yorkshire (make accommodation "wheelchair friendly" and you can double your prices) on the 10th August, our Sh*t-Ron Berlingo casually announced on the info screen that we had a major engine fault. It was too late to rent another wheelchair accessible vehicle, and our garage could only see us on the morning we were meant to leave which was no good.
Jay found a garage that could see us sooner and dropped the vehicle off, only to be told they'd have to order and replace a engine part*. Thankfully it was sorted the day before we left and we piled up the Sh*t-Ron with a shower chair, my massive air mattress, food to feed my numerous cousins who were visiting and staying with us and we left. After 4 hours of driving we had only reached Milton Keynes. So that equates to 65 miles in 4 hours. Needless to say it was a long drive considering the distance.
*Apparently what was needed was a turbo component. Considering the Sh*t-Ron appears to be powered by an asthmatic lawn-mower engine we were slightly incredulous that the word turbo was being bandied about.
Once we'd found our lodgings, we were much happier. Sh*t-Ron had survived. I wasn't weeping with pain and my lovely wife had recovered from tripping up on the pavement and face planting at a motorway services as she went to get us some food. Her mishap was concerning and funny in equal measures, but she was quickly up, briefly looking around for any witnesses, whilst I was trying to phone her to see if she was okay. Helpfully her phone was in the car.
Once Ross and Amanda left on Monday we had a fairly quiet time exploring the area. My newly discovered Greek relatives visited on the Tuesday for some chicken. mushroom and bacon pie. My cousin Mike is a chef and even he was effusive in his praise for the pie. Did I mention my wife can cook up a storm? Mike and his family live in South Yorkshire. I'll explain what I mean when I say "new" family in a later blog. Anyway we had a great time there and made our way back to London, feeling like we'd had a good break, but as usual, could have done with few more days.
So back on Friday and of course, reality bites with a neuro-oncology appointment on the Monday and Round 12 of chemo. Lovely Dr. Saran has emigrated to New Zealand with his family and I wish him all the best. He has been my doctor since 2011 and has been supportive, kind, honest and I've always felt he has treated us like humans with real fears and worries, rather than faceless cancer sufferers. Anyway the new guy prescribed the 12th round of chemo and has booked me in for a scan next month.
So Round 12 of Chemo? My hair has fallen out again and Jay gave me a wonderful skin-head shave. I have been throwing up regularly. I can't stomach anything but soup at the moment, which is really unusual for me as my appetite has never been affected by treatement and steroids usually make me constantly hungry. So when I ate soup three days in a row, my wife was seriously worried. Anyway I'm hoping it'll pass and Ginger Root tablets seem to be working pretty well for the nausea and sickness.
In terms of the future and treatment, we have a scan and take it from there - All I know is that I'm giving chemo a break irrespective of what they tell me. I've had so much poison over the last year and my body is now rejecting it severly so I need a break. If I was a bear I'd be planning my hibernation right about now as my battery is on low-power mode and I feel like I could sleep for a year. Hopefully I'd wake up feeling better and have enough energy to do more than just function.
At an NHS assesment at my doctor's surgery a nurse asked my least favourite question, which is "how do you feel within yourself?" My answer was I feel cr*p. That was a big mistake as that meant I then had to answer a heap of mental health questions. Am I suicidal? Do I feel there is no hope? Do I sometimes feel alone in the world? Pretty big questions.
The truth is what else are you meant to feel, if not a bit cr*p? Of course the nurse was just doing her job, but it made me remember a classic Zimbabwean T-Shirt slogan that simply read 'cancel my subscription to your issues.' Needless to say I'm think fine and I convinced the nurse I wasn't going to go postal and am actually surprisingly mentally sound.
Of course, the reality is whatever my malaise may be, there are millions of people out there in far worse situations.
On that note, Happy 70th Anniversary to the NHS. We may have had our ups and downs but I am truly thankful to all the people who have kept me ticking over. I think that the average Joe has no idea how lucky we are to have the NHS, even though I'm the human version of a Panda when it comes to being cost-effective. If you have no idea what I'm talking about read https://www.nytimes.com/2006/02/12/us/eats-shoots-leaves-and-much-of-zoos-budgets.html
Love to you all and over and out.
My email address is now bruceallardyce@hotmail.com
