December 2022 brought me the diagnosis of head and neck cancer after I’d discovered a lump in my neck in October. I’d had various scans and a biopsy by that point so was bracing myself for the worst, but nothing prepares you for THAT news (although the number of nurses and support staff who were crammed into the consultant’s office was a pretty strong clue). That day was the start of a roller coaster journey which thankfully has reached a happy destination about 7 months later.
The timeline moved quickly and within a month I had a 6 hour operation to remove the branch of lymph nodes in my neck and my right tonsil. I felt ok about this although the scar and 23 staples were a head turner (for example, in the local coffee shop)! and was happy to learn some weeks later that the primary source of the cancer was in the removed tonsil with the secondary tumours in the removed lymph.
March heralded the start of 6 weeks of daily radiotherapy (with weekends off for good behaviour) which on average involved a 3-hour round trip to the Christie in South Manchester. Doing the journey, waiting around, and being pinned down in my mask during treatment each day was mentally quite taxing and it must taken a lot out of me physically because I spent most of the weekends sleeping! Then again, the pain drugs probably had something to do with this too. In mid-April I finished my 30th session and was happy to ‘ring the bell’ to signify the end of treatment. I’d seen a lot of people doing this over the 6 weeks and it was a mental target for me to get to. It felt good, I nearly pulled the bell off the wall (I’m heavy-handed like that), and then promptly blubbed like a baby. Overwhelming stuff.
And then it was a waiting game and trying to get back to some kind of normal routine. I weaned off the pain drugs slowly (initially not slowly enough with the morphine – that was two rough days…), continued to manage the damage to my neck (not a pretty sight until the scabs came off), and got back into the office more at work.
The next big milestone was the 12-weeks post-treatment CT-PET scan which would show whether there was still any cancer present. After this it was another 2 weeks for the consultant appointment to give me the scan results. In my case I didn’t have to wait that long. The week after the scan the consultant phoned me out of the blue. After a brief introduction he just said “look, I’ll cut to the chase” and my worst fears bubbled up to the surface…they were immediately pushed back down when he gave me the good news that the scan results showed I was clear. This was a big shock that I was totally unprepared for, but importantly the news was what I wished for. The feeling of relief was immense though I still felt numb with shock!
So, it’s July 28th today which is just over 7 months since my formal diagnosis and 6 months since the surgery. It’s been a time for constant reflection and introspection with a lot of uncertainty. Coping strategies were massive for me. I read a lot about the cancer I had and the treatment and listened to medics and patients on podcasts. These first-hand accounts were really valuable. I also kept a private video blog for myself to document how things were going, how I was feeling, and what was coming up. Offloading how I felt into my phone helped to relieve a bit of pressure by not piling things on those around me all the time. Mainly though, I threw myself into work with the primary objective being to occupy my mind and push the crap stuff to the back of it. The day after the operation I was in my hospital bed reviewing a PhD thesis I was due to examine (nurses thought I was a bit odd!) and I pretty much worked from home once I was out of the hospital. It worked for me but now it’s summer time and I have this good news I also feel cognitively shattered and in need of some mental and emotional restoration. What this will look like I’m not sure but having time to process and think about the last 7 months (well, 9 months really as my dad passed away last September) is now the priority.
Aside from keeping my head busy, knowing that my family, friends, work colleagues, and in fact the academic community had my back to some degree was both humbling and motivating. My wife Sue is a legend anyway, but she never wavered during any of this. She looked after me, gave me a kick up the backside when I needed it, reassured me, asked questions of the doctors that I’d forgotten, travelled with me every day during the radiotherapy, and looked after our boys and seemingly everything else. My two young men have also been immense in dealing with this while still grieving their grandad and going through their own stresses with A Levels and professional exams this summer. I am truly blessed have them in my life.
So that’s it, I’m out of the woods. Anyone who has had head and neck cancer will have their own story. I’m really lucky that my case was dealt with quickly and effectively with no cancer spreading beyond the areas removed in surgery. BTW, I couldn’t write this without giving massive props to every NHS staff member who I came into contact with. Every interaction was characterised by patience, understanding, expertise, honesty, and humour – solidarity to them in their struggles with this tin-pot government (…rant over).
I also know that others are not so fortunate and while I’m so so happy with my outcome I am certainly not smug or underplaying the seriousness of what cancer patients go through every day. Personally, I still have a dropped scapular and limited shoulder mobility due to the surgical damage to my accessory nerve, my taste has thankfully returned but my salivary glands are damaged which means a pretty much constant dry mouth (I no longer class cheese and crackers as my favourite snack 🙁 ), I’m missing facial hair on my neck and jaw, have to use dental trays with special toothpaste for half an hour each day, and have lymphodema around my neck. These treatment side-effects are though, a small compromise and the gift of being cancer-free far outweighs them. However, I feel it’s important to mention that people living with cancer or who are in remission will often have these other ‘hidden’ complications and side-effects which no-one else knows about but which can impact on daily living and quality of life.
Last word then, as this is really a physical activity and health-oriented web site. Every medic I spoke to this year emphasised the importance of a physically active lifestyle. My doctors told me that my surgical recovery was really quick because I was fit, healthy, and active. Although it was a slog at times I kept up some light running and indoor biking workouts, plus some weight training when I could get to the gym. This helped to sort my head out, keep me grounded where my progress was concerned, and gave me a burning motivation to get back to some kind of fitness. I’ve entered the Manchester half-marathon for October and if my nagging glute injury will allow me to train for it, completing that event a year after first discovering the neck lump will be a big step to giving me some closure from my dance with cancer. However, as I’ve learned this year, it’s one day at a time….
Thank you for sharing your experience, Stuart. Best wishes for some fun this summer and continuing recovery.
Hi Ric, thank you for reading and for the good wishes!
God bless Stuart…you and your family. Am a collaborator on a trial (PetNeck2) focused on supporting patient-initiated follow-up for Head + Neck cancer patients. So many details and challenges for the project team running a RCT, but your eloquent, moving, inspiring blog reminds us why all the research and evidence-based clinical practice is so important….and the humanity and celebration of life at the core of it all.
Thanks for these words Joan. HNC is certainly a really challenging and worthy research field, and I’ll certainly look up this trial. Best of luck to you and the team.