UPDATE: Sadly it seems it’s not as clear cut as we thought. More here.
My cancer has shown a ‘complete metabolic response’. This doesn’t necessarily mean that I am cured, and there’s always the risk of future reoccurrence, but it is literally the best result that can be reported.
It means the cancer is now gone and there is no evidence of disease.
It’s not over, because I have at least two more full rounds of chemotherapy to undergo, as well as potentially months of reconstructive measures on my hip/pelvis where the cancer has eaten away the bone, but…my cancer is basically defeated for now. I’m not going to die.
Everyone is overjoyed, and it has been so wonderful seeing the people I love relax after three months of heartbreak and worry. It’s like everyone can finally breathe again.
My parents were with me for the meeting, and the intensity of emotion in that room is something I will never forget. From paralysing terror at what we might hear in the next few minutes, confusion and disbelief when first told the amazing news, through to indescribable relief and elation when it was confirmed.
Ever vigilant (after I made her promise right at the start of this that she would document even my worst moments), my mum managed to snap what I think is the most important picture I’ve ever had taken of me. It was after the oncologists had withdrawn from the room, and we had been left as a family to take in the news. I sat sobbing on the hospital bed (I was still an in patient for neutropenic sepsis at that point), clutching Dad, crying together.
As for my results, I can’t actually wrap my head around them. Talking about it makes me feel almost dissociative. If my writing feels a bit flat, and not as euphoric as you might expect after such brilliant news, it’s because I haven’t processed everything yet.
I’m relieved, for sure, but asking myself how can something as terrifying as Grade 4 cancer have been reduced to ‘no evidence of disease’ in just three months and two rounds of chemotherapy? Obviously I trust the medical expertise of my oncology team, but my mind simply can’t accept it.
Hell, I don’t think I’ve even really processed the initial diagnosis. I still don’t see myself as someone with cancer – just as someone who has had to go through the medical motions and have procedures done, but beyond that it’s not something that feels real. It happened to me and I just had to go along with it.
Perhaps foolishly, I didn’t expect my feelings to be so complicated upon hearing such good news. It’s always portrayed as this defining, blissful moment in a cancer ‘journey’ (good lord I hate that phrase) and you can understand why – but it isn’t like that for me. Not yet at least.
So what comes next?
On Monday morning the oncology team will meet to discuss the next steps, including whether or not I should continue with my current treatment plan and have two more rounds of BEACOPP Escalated which, whilst quicker and more hard-hitting, would pretty much guarantee infertility and even an early onset menopause or whether I should be de-escalated to a chemotherapy called ABVD.
This new chemo regime would be ‘gentler’ on me (insomuch as chemotherapy can ever be gentle) and there’d be a greater likelihood of my retaining some fertility/avoiding early menopause. The ABVD would be three or more rounds over a 28 day cycle, and so would take more time.
My gut instinct, which I always try to listen to, is to go for the ABVD. Short-term sacrifice in terms of time and resources in favour of potential long term gain. The one question I have is whether the treatments see a huge difference in reoccurrence rates further down the line.
Other than that, it’s almost ‘cancer business as usual’, but this time without the looming question of survival. From now on, no matter how rough things get, I know that every injection given, every infusion endured, and every damn side effect I experience will be contributing to that amazing result of ‘complete metabolic response’ and the end goal of being completely cured.
I will, of course, be blogging about it all along the way. You’re not getting rid of me that easily!
P.S. I played very little part in fighting this disease, other than turning up for treatment.
No, instead I owe so much to so many people. People whose love and kindness have made my battle far less isolating, who have helped me with everyday tasks that I couldn’t face, and who have made sure I didn’t feel isolated at any point. It’d be a whole blog post if it’s own if I were to do thank each individual.
For now, and in a post so central to this blog, I want to take the time to thank a few key people.
Mum, Dad – I’ll never be able to adequately put into words how much of a difference having you around throughout this has made to me. Your fierce love, your endless patience and your tireless determination to see me well has truly been the foundation of any positivity I have maintained and any progress I have made so far. You are my best friends, and the fact that you would upend your lives and travel hundreds of miles to care for your adult child is just a small glimpse into the compassionate and brilliant people you are. If I end up even an iota as kind as you both, I will be happy.
To Barney, Tracie, Nick and Finn, I’ve long known that I’m incredibly lucky to have been accepted into such a fantastic family, but the situation we’ve been thrown into has shown just how deeply those roots have grown for all of us. Without your love and support, as well as proactive attitudes which have quite frankly blown me away, the medical side of things would have been an indecipherable labyrinth of tests and procedures and the emotional side of things would have been overwhelming. You’ve helped keep me sane, feeling loved, and even entertained (thanks Finn).
To the NHS and it’s incredible staff – thank you for saving my life. I wouldn’t be writing this without your exceptional expertise, your cutting edge research, and your superhero frontline staff. From my consultant oncologists, chemotherapy nurses, A&E staff, through to those helping to feed hungry patients, you’re truly who I owe my life to. I will never take for granted the incredible health care we have here in the UK, and I will do all I can to help fight for our brilliant NHS.