#thisisGraham
I have been enteral feeding for 18 months. When I look in the mirror, I think who is that? It’s not the man I knew in 2014BC (Before Cancer). Nine years ago I was a 57-year-old, fit man approaching the later years of my career and looking forward to my autumn years and some well-earned leisure time!
In early December 2014 I developed a sore throat, along with the rest of the family, but it never went, and by New Year 2015 I knew that things didn’t feel right. After several months of appointments, antibiotics and then various tests and scans, I was eventually given the full “download”… the cancer diagnosis came as a massive shock, the treatment was going to be brutal, but I had a high chance of survival and recovery. How could this happen to me? I eat well, I don’t smoke, drink moderately and exercise regularly. The drive home from the Royal Marsden felt like an eternity, and having to tell my daughter was so incredibly hard; it’s been a roller coaster for my family and me since that day.
The first few weeks before my chemo-radiotherapy treatment started, life had become a stream of hospital visits and daunting new information. First of all, removal of my molar teeth (who knew that was a necessary precaution, to avoid post-radiotherapy gum infections resulting from reduced saliva). I was fitted with a face and torso “mask mould” to secure me to the radiotherapy bench. I had regular meetings with my consultants and specialist nurses who became my guides through the unknown and my source of security during some very dark days.
The tumours were at the base of my tongue and my tonsil. I had 30 days of radiotherapy, plus two sessions of chemotherapy. My senses took a hit, my ability to taste and smell, and gradually my abilty to even walk short distances without resting. I’m a pretty resilient person, so it was a case of gritting the teeth I had left and take things day by day. After about 10 days of radiotherapy my mouth and throat were completely ulcerated, so my diet became one of supplement drinks preceded half an hour before with oral morphine to reduce the pain of drinking and swallowing the liquid. Eventually I succumbed to a brief period of using a feeding tube as I was unable to manage enough nutrition orally. I lost 2.5 stones and endured severe burns to my neck and shoulders due to the intense radiotherapy.
My recovery journey in terms of repairing some of the damage and side effects started around mid-August, and I received the “all clear” news in September; my tumours were gone and there was a very good chance they would not return. That was a good day! But the months that followed were very challenging, My saliva still hadn’t returned to allow me to eat normally; I had dreadful mucositis which took time to resolve. Foods I loved tasted different; I choked, and spicy dishes were painful.
One of the biggest challenges was retraining my brain to “want” food and rediscover my appetite (I tried hypnotherapy to help my aversion to feeling sick at the mere sight of food). It seems bizarre that I struggled so much with wanting food, whereas now, unable to eat or drink, what I wouldn’t give for a curry and a beer!
My eating and drinking capability improved throughout 2016 and 2017, my strength increased and I gained weight. With the support of post-cancer visits to the hospital, my life was looking good. Family holidays restarted and my favourite activities: cycling, cinema, concerts, fitness training, social events, etc. were back on the agenda.
However, I still experienced periods of tiredness and feeling unwell, but accepted that this was due to the absolute battering I had taken. I returned to work fulltime during 2017 but found it difficult. I put this down to the usual seasonal viruses, commuting and working long hours. Eventually I stopped working in the spring of 2018 and hoped this would provide me with the ability to focus on my health and a better quality of life. Unfortunately the periodic spells of feeling poorly continued during 2019.
In 2020, when COVID hit us all, I was having regular “flu-like” episodes, feeling unwell frequently. It was impossible to see my GP as my symptoms were like COVID and prevented me from being seen face-to-face. Antibiotics were the default solution. I felt better for a brief period and then I didn’t!
In November I was rushed to hospital with acute pneumonia, pleurisy and sepsis, and things were not looking good. I spent 2 weeks in hospital and for several days it was touch and go. The poison was drained from my lungs and I was fighting an acute infection; my infection marker was just under 400 versus a “normal” reading of under 5, one of the highest ever seen by the consultant. Eventually a rare bacteria was identified and I was given a targeted antibiotic; I was discharged, extremely frail, to deal with a slow recuperation.
However, I was now aware that my “flu-like” episodes were due to aspiration; deposits of food and drink were infiltrating my lungs, causing trauma and becoming infected. Just simply eating and drinking, like a “normal person”, was now a significant risk to my health. My swallowing mechanism had gradually deteriorated following radiotherapy and was no longer fit for purpose. I was advised that the best, and only real, solution to remove the risk, was to have a feeding tube inserted into my stomach and cease any oral intake. In the meantime, I would take antibiotics regularly to reduce the chances of infections.
This felt like the end of the world. I think I felt more devastated than when I received the news of cancer… I resisted for 9 months despite still struggling health wise; I had taken their recommendation very seriously but my “fighter alter ego” continued to “test” the antiobiotics and continue to eat and drink. I wanted to give myself one final run at it, to join in with those celebrations, holidays, weddings, Christmas and the other 1001 occasions we share without a thought. However, in October 2021 I knew my quality of life was pretty much non-existent, the trickle into my lungs continually knocking me over, and I decided to go ahead with the gastrostomy.
Eighteen months down the line I can say that the new feeding regime was relatively smooth. I had good support from the Nutricia team and have learnt to manage the process well. My emotional challenge was much harder, and ongoing. To quote from the song Star Trekkin by The Firm, “It’s life, Jim, but not as we know it.” It’s certainly a journey of mental exploration and discovery!
My quality of life has, however, improved dramatically. I feel much more like my old self and am no longer suffering from infections. I’m back in the gym, cycling, and my fitness is gradually improving. My physical progress shoulders much of my mental burden, which comes in waves most days. Particularly during the spring and summer, it is still the BBQs, family gatherings, picnics and just being able to “grab a pint and a bite” that feels so painful and unfair! That loss of being fully involved socially feels so profound; that sense of being complete, fulfilled, enthusiastic, to be part of a group, is missing… events are not “punctuated” appropriately. I’ve had 6 months of psychotherapy, which helped, and I understand that acceptance is a crucial element for moving forward. It has provided good tools and techniques to help manipulate my negative thinking. I’m also reconsidering hypnotherapy to quieten that voice…‘if only things were different’, ‘why me?’ Maybe then the man in the mirror can see it’s still me, a confident, happy and accomplished man.
I will finish the story by acknowledging there is so much to celebrate in my life. I have the best motivation in the world to feel positive; my beautiful daughter, Grace, my son-in-law, Andy, and my two amazing grandchildren, Marley and Navy. I’m here! I travel at home and abroad, I enjoy swimming, relaxing, walking and exploring new places. We now tend to opt for self-catering, not too remote so food is available for others. The airport security check-in can be fun with 60+ bottles of nutrition to “smuggle” in. Planning things like holidays and days out is now much easier as I can be confident that I will be feeling good.
Finally, I would like to dedicate this piece to my wife, who has been my rock from the moment we received my cancer diagnosis. She has not waivered for a second, she has nursed me, comforted me, thought and fought for me, nagged me, and now copes incredibly with the “eating for one” lifestyle that we “share”. Her ongoing encouragement gets me through difficult times and I know my needs are central to her thoughts… my Mandy.