"We’re Going to Catch a Big One. What a Beautiful Day! We’re Not Scared." - Michael Rosen
I must admit that I am rather partial to a nice CT scan of a morning. There’s nothing quite like a computed tomographic scan of your insides to give you a slice by slice appreciation of what’s actually occurring in there. Indeed, in the past I’ve always been terribly anxious to get to my next CT scan as soon as possible to confirm if my cancer is currently growing, shrinking or just menacingly loitering with bad intent.
When I started my current course of chemotherapy (and steroids) three months ago I instantly started to feel a dramatic improvement in my condition. Although I put the initial spike in my improvement down to the steroids, the fact that many of the symptoms I associate with the cancer itself also started subsiding gave me a lot of confidence that the cabozantinib was doing its cabozantiniby thing too. Until recently I have therefore been relatively content to simply assume that the chemotherapy has been working based purely on how I was feeling. Even the chemotherapy side effects, tiresome as they were, also helped reassure me that the chemotherapy was up to something.
In the last couple of weeks however, as my next CT scan approaches, I have started to become a lot more anxious again. My abdominal agony has been getting steadily worse over the last two weeks requiring me to take more morphine to try and dull the pain. Whilst I don’t have a definitive conclusion as to what is causing my increased abdominal pain I find myself now constantly speculating about whether it could be an indication that the chemotherapy has now either failed or stopped working at the new lower dose. I have therefore found myself investing a lot of hope in the fact that my impending CT scan will provide some more definitive answers and help me stop hazarding these worst case scenarios.
It’s not just the abdominal pain that has been causing me concern lately either. My blood tests have been showing high ALT scores suggesting that my liver is struggling too. I have been visiting the hospital weekly for blood tests to keep an eye on my liver function, and whilst it is gradually dropping now that I have lowered my chemotherapy dosage, it is nonetheless still double what the NHS Direct website suggests it should be.
So despite having had a relatively good three months or so on my new medication the combination of my liver function problems, increased abdominal pain and a rather uncomfortable bloated stomach have started to persuade me that things might not be going quite as well as I’d hoped. I’m therefore counting the days down to my approaching CT scan to either confirm my fears or settle my nerves.
I’m booked in for my CT scan on Tuesday afternoon and I have my consultation booked with Dr. Wheater on noon the following Wednesday, so I’ll only have a day to wait before I get the results of the scan. A week prior to the scan however I get a phone call from Dr. Wheater’s secretary asking if she can move my consultation with Dr. Wheater to Tuesday. I tell her that I’m perfectly happy with that as long as the consultation is after the CT scan as there not much point in seeing him before he has seen the results of the scan. Her preferred appointment time was before the currently booked scan but she instantly grasps the logic in my suggestion of having the CT scan first so agrees to try and shuffle things about a bit. She rings back a few hours later to confirm that my CT scan has now been bought forward to 9:30 on Tuesday and my consultation will be at noon on the same day. The radiologist will not have time to write up the full radiology report, but Dr. Wheater will have on-line access to the latest CT scan images and be able to compare it with the baseline scan we took before I started the current chemotherapy treatment. I happily consent to her new schedule, indeed, the sooner the better.
Finally, it’s Tuesday. It’s been a bloody long time coming. I’m up early. I’ve had my country crisp clusters with crunchy nuts. I’ve had my steroids. I’ve had my morphine. I’ve had my chemotherapy pills. I am ready for my CT scan. I am not afraid.
We arrive at the hospital nice and early so I decide to pop into the oncology clinic first for a quick blood test before my CT scan in order to pre-arm Dr. Wheater with as much data as possible prior to my consultation. The nurse in the oncology clinic is pleased to have first dibs on my un-pricked arms before the nurses’ downstairs in radiology get their fat needles into all my best veins. Having supplied them with a fresh vial of blood I head downstairs to the oncological radiology department and check myself in on the computer screen. After a few minutes they bring out my litre jug of contrast for me to drink and I suddenly remember that once again I have forgotten to bring some fruit flavoured squash with which to disguise the foul tasting contrast. I pour myself my first cup of clear liquid and quaff it down it quickly. It doesn’t actually taste so bad today after all, perhaps I’m getting more accustomed to it, or perhaps they have a new less unpleasant tasting formula. I work my way through a few more cupful’s and discover that by the time I reach the bottom of the jug its actually even more foul tasting than ever – they clearly just didn’t stir it properly.
After imbibing a litre of the terrible tipple I’m called through to the pre-scanner room so that I can be fitted with a cannula that will form the interface between me and the warm contrast they plan to remotely squirt into my system during my scan. I offer the nurse my left arm as there’s already a bandage on my right arm from my recent blood test. After two failed attempts to get the cannula fitted the nurse toddles off to find a doctor or another nurse with a little more experience of sticking needles into awkward patients like me. I really should insist on getting a doctor to cannulate me in the first place but I don’t like to make a fuss. A new nurse arrives after ten minutes and takes a look at the two failed attempts on my left arm before switching to my right arm and discovering the bandage from my earlier blood test. She removes the bandage and decides that she’ll be able to go back in through the same hole again, she promptly installs the cannula and positively tests it out with a quick squirt of cool saline solution that I feel shooting through my veins. Once successfully cannulated I’m ushered into the scanner room where I mount the flatbed and drop my trousers, I’ve done this quite a few times now, I know the drill.
I follow the usual breathing instructions from the machine and I’m dragged in and out of the rotating scanner as the warm solution is whooshed through my cannula giving me a strange but now familiar sensation as it makes its way around my body. After the scan the cannula is removed and a fresh small bandage placed back over the hole. I’m asked to put a bit of pressure on the bandage and sit still for five minutes just to make sure I’m OK. I take the opportunity to update Facebook with how today’s cancer hunt is going. By the time I’ve posted a few pictures and updated everyone with the pertinent details of my failed cannulations I notice that my shirt sleeve has turned completely red and my arm is dripping with blood. Perhaps I would have been better off applying a bit of pressure to the bandage as instructed rather than messing about on Facebook. The nurse spots my bloody sleeve and seems exceedingly concerned about how my wife is going to get the blood out of my shirt sleeve. She rushes off and returns with a syringe of saline solution which she spurts onto my sleeve before giving it a damn good scrubbing. She spends a good ten minutes scouring more salty water into my shirt before she’s satisfied that she’s got all the blood out. I thank her for her help and apologise for my own stupidity and head off to the reception to answer Tori’s questions about why it took so long and why my shirt is so wet.
It’s still another hour until my consultation with Dr. Wheater, but we have nothing else to do so we head back upstairs to the oncology waiting room anyway. After a few minutes Dr. Wheater walks by and clocks us waiting for our appointment. He heads into his office but after just five minutes sticks his head back out again and calls us in. He has a rather big smile on his face. Perhaps it’s going to be good news after all. Dr. Wheater has two images up on his computer screen, one is my baseline CT scan from about four months ago and the other is the one from half an hour or so ago. Dr. Wheater exclaims that he had to do a double-take and check that he was in fact looking at the correct scan. There has been a significant shrinkage in all of my tumours. The numerous small tumours in my lungs seem to have gone, the tumour in my hip bone has all but disappeared and there is evidence of the bone growing back again. The large main tumour on the side of my liver is now just a thin sliver with a few small remnants of the original tumour dotted around. The string of tumours in my tummy have also shrunk down to just a few specks. This is far better than I had hoped for and clearly far better than even Dr. Wheater had been anticipating.
Obviously I’m not cured, no one even dares use the word “remission” yet either, but nonetheless this is a massive positive result. I ask Dr Wheater how long I could expect the cabozantinib to keep on working. He tells me that on average it is effective for about a year. Having already used up my previously proffered 18-month life expectancy quota, that’s a whole extra year now on offer that I really wasn’t expecting. The estimated year of effectiveness is however an average taken from a number of patients with a great deal of variance between patients. Some patients can do significantly better than a year, and other patients significantly worse. The patients for whom it works longer however also tend to be the patients who get the most significant initial benefit from the drug. This all bodes extremely well for me and increases the probability that the drug could work for me for even longer than the year average. I don’t want to get ahead of myself just yet though. Nonetheless reaching the end of 2018 is suddenly looking a lot much more achievable than it was yesterday.
I awake the following morning and find I still have quite bad abdominal pain and sore feet, but never mind, it all seems perfectly manageable now that I know that its just the chemotherapy kicking the shit out of my cancer.