This fortnight has been something of a rollercoaster, swinging between highs and lows, the good, the bad, the ugly and pretty much everything in between.
I have been either at a hospital or the treatment centre for 5 out of the 10 days since I last wrote. Fun times, let me tell you. I will try to keep this brief. The first of those appointments was for the latest blood test to see if we could start the 3rd cycle of the targeted therapy drug. I was already 2 weeks behind due to the shite cells being lower than they had ever been. This time they had made a small improvement of 0.2 (let’s not go mad) but this was enough for the Prof to let me continue, albeit on a lower dose. I am the only person (at my cancer centre) for whom they have ever dropped the dose this low. In these circumstances it is never good to be standing out. If the shite cells don’t cope with this lower dose there is no further dropping to be done, so I’m guessing the Prof will be, and I quote “looking in the chemo cupboard”.
Around that time I had started developing some very odd pains from my neck, through my ears in to my skull. Also my head was very sensitive, it hurt to brush my hair. I should explain that up until February I was generally of the opinion that if a pain went away in a few days it wasn’t worth worrying about. I learnt, the hard way, this year that by ignoring pain last year, I was ignoring my body trying to tell me that it was busily growing tumours. So now, pain gives me alarm bells and I have to engage all my mental resources not to go in to a flat spin panic. I told my oncology nurse what was going on and she immediately booked me in for a MRI. I will tell you straight away that I don’t have a brain tumour and so far there is no evidence of anything else going on to cause the pain. I however, waited the best part of a week and spent 4 hours (YES 4 HOURS UUUGH) in the MRI machine before I knew the outcome. I can not tell you how much I hate the MRI machine. It’s like being buried alive with the added extra of a pneumatic drill in your scull. Anyway. When I met the Prof this week I asked him what was going on in my head and he replied “don’t worry Abi, you still have a brain”. Which is nice. The interesting thing here is that despite the 4 hours scanning my head, neck, jaw, clavicle, C spine and shoulders, he refused to make an assessment on whether the tumours are being controlled by the treatment. He ordered me back in the MRI, at the same hospital I had it the first time, for a full body scan. So I have that to look forward to next week at Mount Vernon hospital, which is possibly my least favourite place on the planet.
The weekend after the MRI I ended up in Hemel hospital emergency care because I managed to cultivate a throat infection/pharyngitis. Thanks to the shite cells and my inability to fight off germs for that weekend treat. I keep being told that if I get infections things can go very wrong very quickly so I have to monitor my temperature and hit the panic button if it gets beyond a certain level. Be assured – this is not very relaxing. I am now on some hefty antibiotics (again) and time will tell the impact of this on the cancer treatment.
The day I went to Bushey hospital to get the results of the MRI, I also met the orthopaedic surgeon, who I was referred to previously, to assess the tumour in my femur. The one who threatened to operate on it and pin it so I didn’t fall over and snap it. After a few more xrays he declared my femur to be as stable as it was last time. No evidence of deterioration, which is great news and again means I avoid surgery for the time being.
Whilst there should be less appointments in the next couple of weeks, we are getting closer to the “big day” when the Prof will declare whether we are getting this under control, or not. To me this feels like a major milestone, and one which I have been pushing for and looking forward to and dreading in equal measure. There is no time and no reason to shy away from this anymore – keep your fingers crossed. If the news is good, I will celebrate like a crazy person, breathe out and enjoy the relief. If it isn’t, it will be time to take stock, dig deeper and face in to whatever is to come next.
Apart from being deafened in the MRI, sitting in hospital waiting rooms, hanging on the phone to BUPA, it doesn’t seem like there has been much time for anything else. The reality of course is there is ALWAYS time for fun stuff. Lovely, kind people have taken me out for dinners, tea and cake, milkshakes and cinema trips. I even got my hair cut (it’s hanging in there and not falling out, yet). Some things have had to slip these last few weeks, my apologies to those I have had to let down, I truly hate having to give in to this, but sometimes it is unavoidable.
I have been doing a lot of reading the last few weeks. I would like to recommend all the books pictured below to everybody. The “cancer is my teacher” book was sent to me by a friend of my Ma’s. It will only take you a few hours to read should you be so inclined. It will help you understand a lot about people on this journey (sorry for the J word) but may also help you learn how to deal with those in your lives who have or may be diagnosed. Hopefully it won’t be you, but if it is, you may one day be glad you read this book. I cried pretty much all the way through it, but that’s OK. Sometimes common ground is the safest place to be.
I turn 45 years old (!?) in two weeks time. I am busy reminding myself that getting older is a good thing, because the alternative is hardly appealing. There is LOTS of fun stuff to come in the next few weeks. Family time, trips away, and plenty to be grateful for.
So, as I said, there have been a few ups and downs. I remain resolute, and positive and I look forward to understanding what the effect of treatment has been so far, whatever that news may be.
Mostly, my inner 8 year old is excited about my birthday. If there isn’t cake and ice cream, there will be trouble…
Big Love, AG xx