All of the excitement has passed, the drugs are wearing off, the party is over, the light of morning is contrasting the black horizon. I have been here many times before. I used to love to see a party right through 'till the morning. There is something special about seeing the dawn when I've been awake all night. Partly because my FOMO knows that I've not missed any of the fun, but it's also a time when colour comes back to things, senses feast on the world as it enriches in colour and sound. I've often sat on my own at sunrise after an all-nighter, tapping into this feeling of going from darkness to light and colour. It's a time for me away from normal life that unlocks a connection with who I am.
"The want and need to be derailed. Don't be a tourist – there is always more danger and excitement to be found if you stray from the set path"
Liam Howlett, The Prodigy.
On the 23rd of February, a week and a half after being discharged from hospital, I went to the dental hospital for my first follow up. John, another of my five surgeons explained that the pathology results (from biopsy samples taken after the wide excision in my tongue to remove the tumour, and from the 51 lymph nodes taken from my neck in the selective neck dissection), confirmed that there was no sign of any further cancer. From talking to the doctors throughout my treatment so far it was what we were expecting, but all the same it's a huge relief to have it confirmed. So from my initial appointment when the cancer was suspected to now has been 10 weeks. This means that at the moment I'm not in need of any further treatment. I will have a follow-up appointment every six weeks for the next year then over the next five years the appointments will reduce in regularity until I'm officially discharged from being an outpatient in five years time. In the meantime, through Macmillan cancer charity, I will have ongoing support available to me in the form of counseling, free family tickets for days out, financial advice, physio and more.
General discomfort describes the feeling of things at the moment. Things are gradually improving, but I'm not sleeping well, eating is uncomfortable and awkward and I've got sporadic nerve pains in my tongue and neck. As nerves are repairing and feeling is gradually coming back I'm getting hypersensitivity and twinges. The last couple of days it feels like the left tip of my tongue is burning and if I touch it, I get sharp pains. Where feeling is coming back to parts of my neck, I have a weird sensation of numb skin but very sensitive beard hairs, like they're needles pushing through the skin. In one part of my face I could feel this last week, then I had a sharp nerve twinge and it's gone completely numb again.
The muscles on the left side of my neck are tight and I've got no control of my left trapezius so the rest of my shoulder is compensating.
Energy levels are up and down and some days I feel exhausted. Some days I feel like I've got lots of energy but I tire quickly. I can walk 4-5 miles at a medium pace, but an hour of digging in the allotment and I need to sit down.
This is the hardest phase for me so far. I'm in a kind of no-man's-land in more ways than one. As well as waiting for COVID restrictions to lift, the girls are about to go back to school/childminder, I'm waiting for skydiving work to start again and I can't manage a lot as my body is recovering. I knew in advance that this would be the most challenging time and it was an extra motivator to work harder on the physical and mental preparation so that I wasn't in this phase for long.
It is during this time that I need to find the strength to continue the work that I initiated before my surgery. I can face a challenge, but facing the calm after the storm is sometimes a harder time. There is too much space for the negative self-talking and the black dog to creep in. The deadline of surgery was an easy target to work towards: there was a clear aim and it wasn't too difficult to motivate myself to prepare. I need deadlines to keep me motivated, not an open-ended time to achieve self imposed goals. The challenge now is how to cement the positive effects. I need to keep focusing on now, instead of worrying about the long-term targets. I need to just make sure I'm taking the right steps today to help me in the right direction and the path will become clearer as I move forward.
I'm at a higher risk of recurring cancer in future so I'm trying to make major long-term adjustments to my lifestyle to give me the best chance of staying healthy.
I'm reading a book called 'Cancer as a turning point' that my neighbour lent me. He's had his own cancer challenge in the past and it's great to have someone so close by who I can talk to regularly about this because he understands more than many what I'm going through. He and I share the allotment directly behind our back gardens so it's a great space to spend time recuperating. The book is written by a psychotherapist who spent 35 years working with cancer patients. He adapted his approach specifically to work with people dealing with cancer, and he developed a method which aided people to enrich their lives to the fullest potential. He has said that in many cases his patients' immune systems were boosted by their new positive outlook and this enabled their bodies to eliminate the abnormal cancer cells. The results he saw ranged from full remission of inoperable cancers to people merely being able to live their remaining days happy and fulfilled. I'm halfway through the book and reassessing what makes me tick and to make sure I keep striving to do the things that make me want to get up in the morning.
This week is two years since Keith Flint from The Prodigy took his own life. I was lucky enough to see them live a few months before Keith died. I've always liked his boldness and his anarchic performance persona, knowing that he was also a passionate, kind and considerate person. He's always been open about his mental health and had a confident disrespect for the way society wants you to behave which inspires people to be true to themselves and not to feel that they should behave in a certain way. I have been inspired by him to be more true to myself and be more aggressive when I need to, whilst also being compassionate and kind. I always thought happiness came from selflessness but I'm learning that I can be more selfish sometimes to be true to myself and happy. I'm not generally affected by the passing of celebrities but I was upset to hear of Kieth's death. Music in general but particularly The Prodigy, has played a significant part in my life as I've often turned to it in times when I need to find energy and inspiration in the darkness. Although they intend to continue producing music, Keith was the ultimate iconic frontman and it doesn't feel like it'll ever be the same again. And by 'the same' I don't mean I want to turn back time and keep things the same. The prodigy are always fresh and innovative.
"Look, at the end of the day, we do what we do because it suits us. Don't you think it's kind-of cool to have a band that offends MTV, that puts out a video that real fans have to dig around for, or stay up late to see? The point is to be true to yourself otherwise you may as well give up."
Keith Flint, The Prodigy
The danger with the label of depression, and something that I've grappled with for years is that for someone who is struggling to deal with the black dog it can feel like it is a definition that pigeonholes them and backs them into a corner. It can feel like, once labelled, it would be a life sentence from which there can be no escape. I've always run away from the label for this reason until recently when I have felt like I have the strength to accept it and not let it define me in a negative way. It is now a part of who I am and I can recognize the positive side of it too. I am inspired by people who I know have their own battle with depression yet still achieve great things for themselves and for others. Depression does not cancel out happiness.