Two months ago, I published this blog.
Since its writing, I have uttered many things that would have seemed utterly bizarre to me at the beginning of 2013, such as the immortal phrase, “I have just been hooked up to a big bag of chemo.” I now know how to correctly answer questions framed in oncology vernacular, like, “What is your primary?” (No, the answer is not a school.) I have also had to hand over control of my life to other people. As strange as this may sound, being the cantankerous, independent soul that I am this has probably been the most bizarre over-arching aspect of my treatment. Then again, perhaps I will have engaged with that all important human quality of humility at the end of my journey, which would be no bad thing.
And it has certainly been an interesting journey, largely played out on a rickety roller-coaster, or at least that is what it has felt like. Of course, I have not been alone on that journey. Whilst medical staff shouted directions at me (or occasionally seized the controls from me), friends and family have also been there to support me and, quite understandably, have asked many questions as I careered, nosedived, looped-the-loop or coasted past them on aforementioned roller-coaster. I confess some of these questions irked me, not because they were anything other than legitimate, well-intentioned or polite, but simply because they were repetitious (at least to me) or because they caught me at a bad time on the ride. Please consider this sentence to be my apology if you caught a curt answer from me as I hurtled by.
After the initial madness of my treatment, which saw my September effectively disappear (a strangely emancipating experience), my chemotherapy regimen has progressed in a manner that has allowed me to get out and about as an out-patient a little more, attending occasions as diverse as international and domestic fitba matches, the Mòd, a Land Reform Review Group advisers’ meeting (yes, I am the bald one in the back row of a photo I was not planning to be part of), a lecture and a launch event at the University of Aberdeen and, most importantly, a family birthday. All of that getting about has to be a good sign, eh?
That crude analysis might have some merit, but I am loath to pre-judge anything. After my initial blog and some follow up coverage in Aberdeen’s Evening Express newspaper, a few people asked me if I might be keeping some kind of treatment blog. My answer was a resounding “no”, primarily on the pre-judging point just mentioned. Whilst the accepted (if paradoxical) wisdom seems to be that testicular cancer is a good cancer to get, and I might have cleared the rockiest part of the journey, I would hate to get anyone’s hopes up unnecessarily (including my own). Further, I do not want to put any pressure on the fantastic staff at the ARI in the form of unwanted commentary from a supposedly learned amateur, commenting on matters that could somehow put a staff member’s nose out of joint, even accidentally.
Standing all of that, readers of my blog and social media contacts do still ask me questions from time to time. Of course, I am delighted people want to know how I am getting on. Getting away from the hospital, and away from Aberdeen, has allowed me to see many other people keen to find out what the prognosis is, for which I really should have sorted out a sandwich-board to detail my stock answers to the most common questions. With that in mind, what follows here is my virtual sandwich-board.
How are you doing?
I am doing fine in the grand scheme of things. In fact, a not uncommon reaction of some people on seeing me has been to say “I am surprised how well you look,” or similar. This is great, but it also makes me wonder how I looked when I did not have cancer and was not on chemotherapy. Perhaps most importantly, the medical staff are making positive noises about how I am getting on and I am happy enough to listen to them. I also understand my “blood markers” seem to be going in the right direction, but beyond that I will offer no more analysis or speculation.
How is the chemotherapy treating you?
Not bad. I have less hair, but my eyebrows are, or rather my monobrow is, intact. Basically, I am something of a Samson. My monobrow must survive: if a Delilah comes along I will be worried.
Moving to more serious analysis, in August I started the CBOP/BEP chemotherapy regimen. Each letter in the acronym stands for a drug: CBOP (carboplatin, bleomycin, vincristine (formerly known as oncovin) and cisplatin (with the P representing platinum, I think)); followed by BEP (bleomycin, etoposide, cisplatin). Each drug has its own potential side-effects, as detailed by Macmillan’s wonderful website, and for the time being I can unscientifically opine that I have dodged the ones I am being asked about the most, such as nausea, pain and ulceration. On the basis I have now met all the chemotherapy drugs that I am scheduled to meet in my treatment, I am optimistic that this will continue until the end of chemotherapy.
After that optimistic note, the pragmatist in me feels obliged to declare that the prevailing chemotherapy treatment for testicular cancer is a shorter course of bleomycin, etoposide and cisplatin, a combination known as BEP chemotherapy. Given the stage of the testicular cancer I presented with, I was allocated to a more intensive chemotherapy regimen, meaning CBOP was bolted at the front BEP. So, this is still serious stuff and easily the biggest health issue my body has ever had to contend with. Again, I will offer no more analysis or speculation.
Any other side-effects?
I have become more sarcastic and sometimes I repeat myself.
What is next in terms of treatment?
As at today’s date, I am in week 10 of 15 of chemotherapy. Two of my remaining weeks are in-patient weeks, involving protracted intravenous infusions: this week and week beginning 18 November. In the other weeks I will just need to pop in and out of hospital for a quick blast of bleomycin, a process that does not involve an overnight stay. All going well, this leaves me due to finish chemo on 9 December or so. As an aside, it is worth noting Aberdeen play St Mirren at Pittodrie on 14 December.
And after chemotherapy?
Surgery of some sort, hopefully not in relation to my lymphatic system but it is a possibility. It is fair to say the offending bollock will have a bit of surgical attention as well.
I will also need to get my PICC line removed and my IVC filter wheeched out, both of which will happen under local anaesthetic.
PICC – Peripherally Inserted Central Catheter. This is a line sited in my left arm where all my chemo goes in, to be deposited in my superior vena cava (where the line ends), just above my heart. The PICC is playing havoc with my piping practice.
IVC filter – Inferior Vena Cava filter. This is to do with blood clots
Um, blood clots?
Blood clots are a whole other story. To be told once I get the all clear. (Note I have said “once”, not “if”. I am still fully of the mindset that this cancer is getting bossed.) I am self-injecting blood thinners daily to mitigate the effect of clotting: not a pleasant experience, but needs must.
Being in an interrogative epicentre is inevitable at certain times in your life. On happy occasions, it is fantastic to share your news. With less happy occasions, there are times when you really cannot be arsed. For the rest of my treatment, I will likely lazily point people to this blog when I am in that mood.
As for the immediate future, I suppose I had better continue on that rickety roller-coaster, which gives me a chance to conclude with the wisdom of Ginger Wildheart. As he sang in the delicately named track My Baby is a Headfuck, “no-one likes a long roller-coaster ride.” I just hope I have got over the bumpiest bits of my long roller-coaster ride at the outset.
I can also confirm that this is as near as you will get to a “treatment blog” from me. No other medical blogs are planned until after my treatment is completely finished.
One last thing. Men: this is another reminder to check your testicles. If you can catch an earlier diagnosis than me, you might just avoid some or all of this rigmarole.