It’s taken just over an hour to get here in the driving rain that only an August day in England can bring, and I was almost there, but for roadworks a mere 5 minutes from the carpark. I spend another 20 minutes in the car-park queue, always the case for here, but I’m anxiously counting down the clock. Thankfully a space comes free just before my appointment time, phew.
I needn’t have worried, I‘ve been sat in the freezing, air-conditioned room for 15 minutes now, twiddling my thumbs as I left my phone in the car, I can’t remember the last time I had to just sit with no entertainment.
Instead I listen to the conversation to my left, a mother and daughter I presume, who have been here 40 minutes so far, the mother uncomplaining, the daughter getting restless and moves off to ask what is taking so long, I smile to myself noticing the difference in patience of the two generations.
I try to make a list in my head of things to mention since I last saw Professor Greenfield 13 months ago. What’s changed and worthy of a mention?
The nurse calls my name, and off I go to be weighed (not friendly scales for my upcoming Mexico holiday!), and have my blood pressure checked.
Two minutes later Professor Diana Greenfield comes to find me and leads me to her room. We talk for around forty minutes about all sorts to be honest. The list goes something like this;
1) Are you feeling fit and well?
2) Any changes since last time that you’ve noticed, new medications?
3) What exercise do you do?
4) Any concerns that I have?
5) Keep up with your vaccinations like flu and covid, and pneumonia please to protect your lungs
6) Don’t burn in the sun on your holiday, especially on your chest.
And then she goes through the joyous list of; Due to having chemo and radiotherapy to the chest, these are the things to look out for in approximately 5 years’ time;
Heart disease, heart physiological changes, lung function changes, secondary cancers, such as breast, lung, and skin cancer (that was a new one on me today), all because of the field of radiotherapy. And of course followed up reassuringly with ‘that’s not to say these things WILL happen, but you are at increased risk so need to be extra vigilant, ok?’ Sounds marvellous!
Most of these I knew vaguely about when I signed up for treatment, but they weren’t fully on my radar at the time, treating the immediate threat of Hodgkin’s Lymphoma was. It’s not until I attend this once a year ‘Late effects’ clinic that I got referred to because I had cancer at a relatively ‘young’ age (45), that the reality of what ‘might’ happen in the future floats to the surface, like a delayed oil spill.
As I told a friend afterwards, I think I’d rather be oblivious.
I’m one of the rarer types of ex cancer patients who doesn’t really think too much about what happened, going through my 18-month treatment journey, during the pandemic no less.
I’m from the ‘Keep Calm and Carry On’ stock of upbringing. Worrying lots is just not in my nature, because what does that achieve?
Even when I got diagnosed, I had it all figured out due to a fascination with all things medical from a young age. 24 hours in A&E is still, weirdly, one of my favourite programmes. I’d diagnosed myself following the 7 weeks of tests, to the point where the Consultant, quite shocked at my blasé reaction said, ‘You do know this is a cancer diagnosis don’t you?’. I did, and I knew all about the treatment about to come too.
I’m not going to lie, treatment was bloody tough, chemo every 2 weeks for 6 months, and of course losing all my hair as a result, followed by 15 days of radiotherapy, and including a stay in hospital for neutropenic sepsis, on my birthday just for extra fun, now that part was scary.
But now, over 2 and a half years in remission, I am mostly fine, apart from reduced lung function due to the scarring from one of the chemo drugs that has me gasping a little up these Yorkshire hills!
I got on with life with a renewed sense of urgency, working hard to build up my small business again as I had to pause a lot of activities whilst on treatment. I was always a ‘You only live once’ kind of person anyway, but a cancer diagnosis certainly gives you an extra kick up the backside.
Anyway back to the room, and the point of this story.
We finished up with an examination of my neck, where my largest tumour was found originally and kicked off all the investigations. I’d noticed a pea sized lump on my right but wasn’t concerned, and thankfully neither was she given I’d recently had Covid, but she said to keep an eye on it and examine my neck monthly.
We finished up with a nice chat about my role now as a Community Coach for Life After Cancer which I was training to be last time we met. Going through all this wasn’t all bad, it led to working with ex cancer patients who are still having physical aftereffects, and still find it hard mentally. It’s incredibly rewarding to be involved as a coach within the LAC team and helping so many people.
So I was all done and dusted, just needed a blood test downstairs. Fab I thought, I’ll be out of here in no time.
Nope! The waiting room downstairs was packed. I handed my form in and picked a chair amongst the throng of people waiting. Between the constant coughing and people milling around, I tried to focus on the TV screen above showing the Women’s world cup game.
But I soon realised I wasn’t really watching it. Instead I was clocking the women who were coming through the doors in head scarves or with that fluffy chicken look that I referred to myself as having when my hair was growing back, and wondering how far along their journey they were and what kind of cancer they’d had.
I glance left and marvel at the kindness of the ambulance driver, coming in to take a frail lady home, trying to make her smile by cracking a joke, and offering his arm to steady her walking.
I see the cheery nurses and healthcare workers buzzing about, and think how ironic it is that they are often overweight, grabbing a cake or biscuit off the little café hatch, just to keep going through a long shift – they don’t have time to look after their own health whilst helping others take care of theirs.
I’m acutely aware that this is a cancer hospital, and yet here I am, the youngest one here and it takes me back to 3 years ago when I came here for radiotherapy. The same palaver driving here and home, waiting for a space in the carpark, having a little dot tattoo drawn onto the centre of my chest for them to work out all the measurements. For 3 consecutive weeks I came here, back, and forth, about a two and a half hour round trip every day, for just 15 minutes of treatment.
I remember the gown and the fact that sometimes I was covered up, sometimes it was wide open, and how exposing that felt in the freezing cold room. How still you had to lay, whilst the machine did its thing and the staff hurrying out of the room so that they weren’t exposed to the radiation too. The loud buzzing indicating they were now safe.
I remember bringing in my covid tests each week, the chats with the nursing staff about the pandemic. It was the time of the second wave then, they were so stretched, but they always asked how my stepdad was doing as he was seriously ill at the time with covid on a c-pap machine in a different hospital. My Mum was at home wondering on an hourly basis what his condition was, and also worrying about me getting the virus, whilst having covid (mildly thank goodness) herself.
I remember the older woman who was there at a similar time as me, who had dementia and was brought in by her carer each time, it was hit and miss whether she would either lay on the bed at all, let alone still enough for the treatment she needed. She didn’t have a clue what was going on, and it was so hard to watch and such a challenge for her carer to encourage her onto the bed.
All this comes flooding back as I stare blankly at the TV screen, and I notice my eyes are filling up for all the people around me, having to go through this damned disease. And I remember what my coaching training taught me, that the mind may move on, but the body remembers.
My mindset is strong and positive, always, but I can feel my body reacting to this environment, being back in this place, it’s a surreal feeling. I take deeper breathes and try to steady my thoughts.
Finally, I am called for my blood test, and the lovely nurse manages first time with my thinner, wiggly veins which is a rarity, and I am grateful. I thank her and leave, picking up pace and heading quickly to the double doors, and suck in fresh, damp air.
Back in the familiarity of the car, and driving to the nearby shopping centre to do the normal things of last purchases for our upcoming holiday, thoughts of ‘what if’ in 5 years’ time begin to recede. Through the coaching work that I do, I know that this morning is just a blip, and my body reacting to the surroundings at the time. The rationale part of my brain knows that this is a completely normal response under the circumstances.
That tiny fearful part of my brain goes over the last few years, and reiterates the fact, in a forthright voice, that I never want to go back to that, come hell or high water.
I’ve come so far since then, I feel healthy as I approach the last 6 months of my forties, my life is back on track, back in control, full of purpose, and good times.
My creative business is doing well, as is our family, we’ve moved house and are happy in our new home building fresh, happy memories.
I wouldn’t have the time, space, or mental energy to do treatment all over again, but yet the simple fact is, that should it happen again, I wouldn’t have the choice, and that’s the part that scares the hell out of me.
When you go through it the first time, you have no clue what to expect, you’re on a rollercoaster ride and in the hands of the doctors, holding on tightly for the ride and grateful to get to the end, I genuinely do not know how I would cope if I had to do it all over again, because then you are acutely aware of the impact, and yet the alternative is not an option either.
So in essence, the trigger is raising that truthful response that I bury deep in normal life, because how else can I truly ‘live’?
Fear has not been a big factor in my life and even less so now, I’m far more likely to say ‘Yes let’s do it!’ to any kind of challenge, because really, what is the worst that can happen now? I fear regret far more than any kind of failure or mistake.
I know the triggers will appear again, I’m not done with follow up appointments yet, and yesterday was a stark reminder that my body is perhaps still processing this, but next time I’ll be better prepared.
Plus, I have huge gratitude that I am kept an eye on by our NHS service, I know that’s such a privilege, and not everyone gets that.
But in the meantime, you’ll find me in a few weeks sipping this signature cocktail by the sea in a sombrero – well not quite the sombrero but you get the picture!
Life is short, and for living to the full; my biggest wish is that people realise this without the nasty experience of a health issue or other difficult life challenges and make the most of their short time on this planet.
We all have fears and ‘what ifs’ but don’t let them hold you back, I certainly don’t. Go and kick ass in your life, whatever that may look like. Follow you passions, and don’t look back, add to your memories instead, and do what makes you feel truly alive and fulfilled.
Loads of love
Juliet x
This is such a moving read. It’s so inspiring ❤️