Update to everyone - my diagnosis - 18th March 2023

Context

I've put my Context paragraph up front this time, and intentionally. This was perhaps the longest, most significant, and potentially upsetting message I would have to send (thus far). I received my diagnosis on the 15th but didn't send the below message until the 18th. I spent a lot of that time crafting this message. Clearly a lot of people received the information from me directly beforehand; a few were (unfortunately for them, fortunately for me) with me when I received the news, others I had to call for a bit of support, and obviously arrangements had to be made to get me home and ready for what was to come. I won't go into any further detail of receiving the diagnosis here and now - it needs its own post - but I thought it important to clarify the gravity of what I was about to send people and the thought I needed to put into how I did so. I'll follow up at the end with some thoughts about how it went down.

My diagnosis - the update

Hey all, it’s that time again. I’ll be honest, this update is a big one, both in terms of volume and significance. Also, it’s not particularly great news, but it is news, and I finally have some certainty about what I’m dealing with and how to manage it. For those who haven’t grown weary and aren’t too uncomfortable to continue, read on, but please read in full; some of the remarks are quite scary, but when you get into the detail you’ll see there are some very positive things to take away. Finally, there are some (frankly selfish) requests at the bottom. They seem blunt, but please understand they are well intentioned and come from a position of immense gratitude at the overwhelming support I continue to receive. They’re simply some basic requests to make things easier for me to manage communicating with what is now over 60 people who have asked to be kept on the loop.

Let’s get to it.

I received my biopsy results a few days ago. Many of you will recall the large tumour (6x11x17cm) in my pelvis, which we believed to be a type of cancer known as a soft tissue sarcoma. Well, whilst the mass is indeed a tumour, it turns out I actually have testicular cancer. Yeah, I know… To be technical for the Googlers out there, it’s a non-seminoma embryonal carcinoma. It’s still something that accounts for less than 1% of all cancers, so pretty rare (aren’t I special). The presence of the tumour indicates that the cancer has metastasised (spread elsewhere). There is also a similar sized tumour in my abdomen (completely unknown until now), as well as lesions in both lungs. This would be classed as Stage 4 cancer, however my specialist informed me that this is the only type of cancer that isn’t categorised in “stages”. My prognosis is termed “intermediate” rather than “good” due to something called an LDH marker, which indicates levels of malignancy. A normal level is around 100-120, with the “good” ceiling ending around the 2-300 region. Mine is 1200. So at least we’re not in any doubt! And please don’t ask me how ball cancer ends up in my lungs, I’m just as confused. I’m equally confused (but overjoyed) to hear that my lads seem otherwise ok and shouldn’t have to go!
Anyway, so what?

Firstly, and this is a key takeaway: this is treatable and nothing is a foregone conclusion, but I do need to start treatment pretty sharpish. I’m expecting to begin chemotherapy within 2 weeks Thankfully, this just about gives me time to undergo sperm banking, to mitigate the likely outcome that I become infertile during chemo. The timeframe is incredibly tight, and it may come down to the day where I must decide whether to complete sperm banking or delay my treatment. Let’s hope it doesn’t come to that. The team are currently investigating the safest amount they can delay treatment. Which segues me nicely back onto the topic of chemo!

I won’t lie, it’s going to be rough, but age and fitness are on my side. I’ll be on three types of drug, which I’ll receive continuously over 5 days as an inpatient. I’ll then receive a smaller dose the week after, and again the following week. I’ll repeat this 3-week cycle 4 times in total. So I’m basically looking at 4x3-week cycles for chemo, assuming I can avoid delay by infection, adverse reactions etc. The cycles will possibly be compressed into 2 weeks if I’m accepted onto a new trial. Finally, there’ll be a decent chunk of surgery to remove what remains of the tumours. My consultant says that if they were to grade the intensity of the treatment on a scale of 1-10, we’re looking at an 8/9. So yeah, looks like I’m in for a shit few months. With all of the treatment I’m going to be at serious risk of infection, a number of heart/lung diseases and, wait for it…more cancers! Lolz. I therefore hope you can all understand that my physical contact with people and (especially) groups of people is going to be minimal if not non-existent. My apologies to those of you whose weddings, birthdays and other events over the next few months I had committed to and may now have to bail.

So yeah, that’s pretty much it regarding cancer and treatment. As I say, not an ideal diagnosis, but the prognosis refers to treatment and the team are still pushing for sperm banking, so I’m confident they believe I can get through this, as do I. I’m ready for what’s in store, and bordering upon looking forward to the challenge (that may sound odd, but it’s true). I really hope you can see the many positive rays peeking through the cloud of uncertainty and bad news.

We’re nearing the end, and I have a few requests to make:
• Many of you ask for news, and I try to respond, but there are 60+ in this group, and that doesn’t even include family. If you haven’t had an update from me it’s because I don’t have one or I’m waiting for more detail to give you a clearer picture, which I aim to do fortnightly. This is the most efficient way I could find, and answering the same questions many times individually is genuinely exhausting, so please be patient and wait for me to send you news. That isn’t to say I want any of you to stop speaking to me as you would normally!
• Thanks to those of you who have sent me gifts and treats, but from now on please stop. I’m still working through the mountain of goodies I received in hospital last month, and am having to cut sugar and various other things from my diet as part of the treatment plan. I hugely appreciate the thought and gesture, but at this stage I want nothing more than your words, humour and occasional company when it’s convenient to you. Besides, in due course I may do a 180 and start making very specific requests for baseball caps, teeny weeny beanies and other anti-baldness devices!
• My situation isn’t a secret, so feel free to share what I have shared with you. I just ask you to consider that it’s a lot of information for someone to receive in one go, rather than over the course of weeks as it was for us. Basically, I’m asking you not to give any of our mutual acquaintances a heart attack by dropping this on them without priming them!
• Similarly, I’m gradually getting around to telling more people but I adopted a policy of informing people as and when we ended up speaking, whenever that happened to be. It was the easiest way, and in my mind more personal than creating a massive WhatsApp group (irony). So if you do break the news to someone, and they seem offended to have not heard it directly from me, please reiterate this to them along with my apologies. Informing my entire circle of friends is (thankfully!) not a quick task.
• I love hearing from you all, but please text before calling; on a good day I manage 3-4 hours’ sleep, and being woken by a call mid-nap can set me back days. Unfortunately I can’t mute my phone in case it’s a hospital call.
• Final request - I don’t need pity, apologies or tears, we’re all about the positive vibes now! Don’t feel the need to remind me that you’re there if there’s anything I need - everyone on this group has already made that abundantly clear in words and actions over the preceding days, weeks and months, and that’s why you’re on this list and receiving these painfully long and detailed updates.

On that note, thank you. For your interest, patience and unwavering support. It means the world to me, and has made a very difficult journey that little bit easier. Big love x

Afterthoughts

Looking back, would I have said any of it differently? No, probably not. As for what I think went well/what I would advise others to do similarly:

• Insisting that people read in full and to the end, at least before they came back to me with questions. I received several messages with questions that were clearly explained in the text, and as much as I appreciate the intent behind them, it was infuriating. I'd spent the best part of 3 days crafting some pretty life-changing updates into a single text message, and it frustrated me that people couldn't be bothered to read it in full. It may sound petty, but when facing down the barrel of a serious cancer diagnosis, you really don't need to be stressing about whether people will give you updates the time of day.

• I kept my requests to the end, but I referenced them up front. I really think my friends did well to stick to these reasonablish requests, and it helped.

• I went into a lot of detail, and there's no denying it! I would rather overwhelm people with information and leave them to disregard what they saw as superfluous than invite more questions. It's a selfish approach, but if ever there's a time to be selfish, it's during chemo prep.

• I tried to be honest about the severity of the diagnosis and the intensity of the proposed treatment, and I don't see any reason to have not done - I was the one going through it, those closest to me may as well know what I'm in for. However, I think I tried to caveat everything (where appropriate) in positive terms. Having a firm diagnosis, a treatment plan, a proactive medical team - these were all huge steps forward in my mind, and certainly something I wasn't going to remind people of before they could begin focusing on the worst.

• I won't go into all of my requests, but one I felt strongly about was sharing my story with others. I was adamant that nothing here needed to be kept secret, and I had no intentions to keep people from telling others on my behalf (a lot of the time, it was a relief!). However, I was nervous that my friends, in their desire to establish a rapid support network, would be a little too direct in their delivery of this information and possibly blindside those on the receiving end. I frequently asked people to consider that they/we had received this information as a gradual drip-feed over a number of weeks, and had been given time to absorb and process it. Dropping the whole story in one go, likely after several beers, probably wasn't going to help anyone process that. It's something I reiterated in subsequent updates, and completely stand by.