When nothing goes to plan

So where was I the last time I blogged?

• Had just had a modified radical neck dissection and was waiting on pathology results
• Was planning for an allogeneic haematopoietic stem cell transplant

And what was the outcome of these?

• Modified radical neck dissection: unsuccessful
• Allogeneic haematopoietic stem cell transplant: didn’t happen

Sigh.

After I woke up from surgery, the surgeons told me that they found more melanoma in my neck than anticipated, but they had taken everything out that they could see and hopefully that was that. Spoiler alert: that was not that.

12 days after my surgery I returned to the melanoma clinic and received the pathology results. Within the hunk of tissue and muscle scooped out of my neck and sent to pathology for testing, they identified 22 lymph nodes – 5 of which were positive for melanoma. They found that the melanoma wasn’t contained to the lymph nodes, and had spilled out into the lymph vessels and muscle in my neck. The margins weren’t clear, meaning there was still cancer in my neck, which I was obviously just THRILLED to hear 😳.

With 5 positive lymph nodes which were palpable before surgery, my cancer was staged at IIIC. The 5 year survival rate for this stage is 40% and the 10 year survival rate is 24%, which is pretty confronting to think about and plays on my mind a lot. But that’s depressing so ENOUGH OF THAT.

The consensus was that as long as there was no evidence of metastases elsewhere, I would have radiotherapy to try and destroy any lingering cells in my neck. By the time I had recovered enough from surgery to begin radiotherapy, it had been 2 months since my initial diagnostic scans and I was due for a new set. The new scans showed multiple suspicious areas, and we were all on high alert again that I might have become stage IV. I had biopsies of my right axillary nodes and my right psoas muscle in the lower back (0/10 recommend) for confirmation. I managed to get in quickly for my biopsies but still, the wait for the procedures was excruciating. The wait for the results even more so. My oncologist didn’t want me to start radiotherapy until we had the results, as if it turned out I had melanoma below my neck then treatment just to my neck would have been futile (not to mention harmful). I was frustrated that my start date was delayed, and asked my oncologist why I couldn’t just begin full body radiation in case it had spread elsewhere. But my oncologist seemed to think that full body radiation at the dose I needed it for my neck would be fatal.. I guess he’s the expert 😂.

After a week of sitting around at home focusing intently on jigsaw puzzles to distract myself whilst constantly on the verge of having a breakdown (I lead an enviable life), I eventually received the last of my pathology results which confirmed my biopsies were all NEGATIVE (!!!) and I could start radio! AH. The relief.

I was massively grateful that radio was still an option, and walking out of my first session was convinced that it would be a walk in the park. Can confirm – it wasn’t. I had 20 fractions of radiotherapy all up – once a day for four weeks. The treatment itself was super quick, it took far longer sitting in the waiting room/getting changed into a hospital gown/getting locked to the table (to immobilise me)/and having positioning x-rays each time than the treatment itself actually took. By the end of my 20 fractions, I knew each and every noise the radio machine made intimately, and could tell exactly where I was in each fraction by these noises.

One weird part of radiotherapy was the gross chlorine-y smell that always came with the second zap. Even though I learnt exactly when the smell was coming and would hold my breath, I could still smell it. It was almost like I was smelling it deep inside my head, ~beyond~ my nose. I know that sounds weird but it was honestly the strangest smell/sensation and quite unpleasant. When I asked the radio technicians what I was smelling, they said the machine wasn’t actually omitting any odours, but that patients often reported smelling weird scents and it could have been due to whatever in my head was being zapped at that moment. Whilst I was quite calm about having radio in the beginning, by my final sessions I was anxious about smelling “the smell” and would dread therapy each day just for this reason. Honestly, what a weird side effect 😂

This was not the worst part of radiotherapy though. Turns out that having your head and neck blasted with radiation is incredibly shit. Who’d have thought! Whilst the radiation kills the cancer cells, unfortunately a lot of the good cells die off too, so the lining of my throat and mouth as well as my left parotid gland was destroyed. This meant eating was incredibly painful (I had to swallow topical anaesthetic before each meal which only just took the edge off) and I completely lost my sense of taste which was TORTURE. The pain was horrible, but I remember bargaining with my body that I would be willing to accept more pain if it could just return some of my taste. 6 weeks post-treatment and a LOT of complaining later, my taste is almost back to normal 😁

To my absolute surprise, the fact that the surgery didn’t yield clear margins didn’t rule out the stem cell transplant after all, the plan was to finish my course of radio and then be scanned again, and as long as I was NED (No Evidence of Disease) then the transplant would go ahead. But halfway through my radiotherapy, I had an appointment with my haematologist, who proceeded to crush my heart into a million tiny pieces by telling me the search for a stem cell donor had finished, and on an international registry of millions there was no match for me. What ensued was a lot of ugly crying in his office, and then a big serious conversation with my oncologist about what to do in light of this news.

There was no amazing Plan B like I’d been hoping for. With stage IIIC melanoma, the best bet is a PD-1 inhibitor which is a type of immunotherapy that revs up the immune system to destroy the cancer. My oncologist and immunologist are concerned without first correcting my CTLA4 gene through a transplant, that a PD-1 inhibitor would push my immune system over the edge and prove fatal – OR alternatively thanks to the immunodeficiency that this same CTLA4 mutation has caused, that the treatment would do nothing at all. Because I am the first person in the world to have melanoma in the setting of CTLA4 haploinsufficiency, no-one knows what the chances of the drugs killing me are vs the chances of them not killing me and actually doing what they’re meant to do, vs the chances of them simply doing nothing at all, so no-one wants to try it unless I become stage IV (ie. terminal), and thus ultimately have nothing to lose if I’m going to die anyway.

With all this in mind, I have made a huge effort to stop worrying about the future and be more present. It has taken an enormous amount of work, but I am becoming accepting of the fact that just because I might not have a conventional lifespan (or conventional life for that matter), that doesn’t mean I can’t have a great life. I know I sound like I’m stuck in 2012 but my answer to pretty much everything is YOLO 😂. Literally though, YOU ONLY LIVE ONCE! I’m about to head to the States for a holiday, and when I get back I’m starting my Masters and will face real life again ha!

Of course literally days after I booked my trip, my haematologist let me know that the haem department had changed their mind about the transplant, and that maybe I could have a transplant after all using a half-matched donor (ie. my dad). This idea seems to have lost momentum so I am sceptical that this will come to fruition, but I’ll deal with that after my trip 😂.

There’s a lot of scary uncertain stuff in my life, but I’m not blogging about this for pity and wouldn’t want anyone to feel sad after reading my posts – as let’s face it, this is a medical account so my posts are never about particularly positive topics 😂. But most of the time I feel quite the opposite. I am invigorated and love life. It’s SO clichéd, but nobody is promised tomorrow. So if you take anything away from reading this, make the most of NOW! The most precious thing you possess is your life, so stop worrying about the small inconsequential things that will have zero impact on your life in 1 year or 5 years or 10 years, be present, and have gratitude.

To finish on a lol, a little while ago a journalist in the UK found my blog and interviewed me. It was initially published in a paper called “Metro” in the UK, and was syndicated to publications in other countries around the world. You can read the original version here: https://metro.co.uk/2018/05/01/woman-left-with-nine-inch-scar-after-a-mole-on-her-ear-turned-out-to-be-cancer-7502842/ but I would have to say my favourite version was the one published in Danish… Slide for the translation 😂

 

 

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Thanks for reading and being a part of my crazy journey!

Until next time,

Morgan xx