Audacious Hope: Navigating the Ups and Downs of My Cancer Journey
A new year of Hope, plans and goals
My word for 2025 is Hope !
It seems like the perfect word of the year for my current situation. I am full of hope that I can finish up my chemo treatment in February and get back to feeling stronger, fitter and healthier. And I have audacious hope that the treatment will have worked it’s magic and the cancer has all gone !
I am looking forward to planning trips and adventures and new goals in 2025 and full of hope that each little adventure will bring me lots of laughter, love and joy. And I’m very hopeful that I can get back to building my business, creating new services and resources and having a positive impact, helping other people to be more of their brilliant self and create a life they love and love the life they live.
Riding the Cancer Roller Coaster
Hope is something that also helps with the inevitable highs and lows of living with cancer, it’s a roller coaster of emotions that I could never have anticipated. I’ve always thought of myself as someone who has a positive mindset – I like to think that I am mentally pretty strong, resilient and very independent. Having cancer is absolutely putting everyone of those traits to the test.
At the end of December I had a half way CT scan to monitor the progress of my treatment. I’d decided that I wanted to try getting the train to Velindre to see if I could manage the journey okay on my own and then pop into Cardiff afterwards to buy some new boots. It was my way of asserting a little independence back into my current situation and proving to myself that I can still do things.
So I walked down to the station, hopped on a few trains and then walked to Velindre. All good and I even though I got there 30 minutes early, they unexpectedly whisked me in early for my scan, reminded me about removing anything with metal, stuck the canula in my arm for the contrast die and it was all done really quickly.
Leaving the hospital I checked the train times and could see there was a train in 15 minutes, so I legged it back to the station and managed to catch the train with 5 minutes to spare. Still feeling good and feeling like I’m smashing all my mini-goals for the day.
Awesome I thought, I’m totally acing the day! Until I got to Cardiff, put my hand in my pocket and realised that I’d left something metal in the pocket of my purposefully selected “no metal bits anywhere jeggings”. Fuckety fuck, fuck ! I started panicking that I’d totally screwed up the scan and then looked up from my phone and realised that there were more people in Cardiff today than when Wales are playing England in the six nations and they’ve all got a very loud cough! So I panicked some more, abandoned shopping and returned home to fret about cocking up the scan, whilst celebrating clocking up 12,500 steps and enjoying travelling by train again (albeit wearing a face mask) !
Half Way Scan Results
On Monday this week I had my 3 weekly review with the medical team. During the review my specialist nurse apologised for not having the scan results to read to me as the computers were down, but she could tell me that it was showing a “good response”. I asked what they see as a good result and she told me that a “good result is one where things are stable, there is no further spread and things are not getting any bigger. Obviously things getting smaller is also very good, but the main thing is that things are stable and not getting worse”.
So in all honesty, my idea of a “good response” would be a lot more than staying stable and would be definite shrinkage, but I understand that in cancer terms, not getting any worse is actually a very positive result.
She phoned me at home a few hours later to read my scan results and told me that it is in fact showing “ an excellent response”. The 3 and a half centimetre bulky mass that I had in Oesphagus now can’t be seen, there is just a thickening in the area, no measures have been given, because it’s not there to measure! There are no nodes showing around the area.
The small nodules I had in my lungs were all shrinking and one had gone completely, the others are all getting smaller.”
Processing good news is harder than you think
I honestly couldn’t have asked for a better result at the half way stage, with 3 more rounds of chemo to go. I thanked her for the amazing news and hung up the phone and had a very big cry before starting ringing around to tell my family and friends. Later that day I posted a little video update on Facebook to share my news and was blown away by all the lovely messages and comments from friends. You can see the same video on my Instagram page by clicking here.
It was a day of incredible highs – I couldn’t stop smiling but also felt a sense of shock and disbelief – I found it quite hard to really take in such good news and believe it could be true.
The following day I actually felt quite low – I kept expecting the hospital to call back and apologise for getting my scan results mixed up ! I know it was my mind in overdrive on full self-preservation mode. My cancer journey has been a bit of a whirlwind, I got my initial diagnosis on 7th October, was told that my cancer is inoperable and had spread to my lungs, so was therefore already at stage 4, ten days later weeks later. I then started chemo on 6th November and just two months later I’m being told that the primary tumour has gone and is now just a thickening in the area, It’s a lot to process and I have realised I need some time for the news to sink in and feel real.
Facing Challenges in Treatment – my first treatment drama
On Wednesday this week, I had my next infusion of chemo (4th round) and immunotherapy (2nd round). I was full of fear for the first treatment, worried that I might have a reaction and the same fears came back for my first immunotherapy dose, but other than some problems finding a vein, each treatment session went really well. It’s fair to say that I had got quite relaxed about my 3 weekly chemo/immunotherapy sessions
Until yesterday, yesterday I had my first reaction. 15 minutes into immunotherapy and I started to get chest pain that spread across my back. I sat with it for a few minutes until I realised it was just getting worse and called the medical team over. My first thought was that I was having some kind of heart reaction – perhaps even a heart attack and my second immediate thought was “oh no, I’m not going to be able to have immunotherapy and I’m never going to get better”.
The medical team were awesome, stopped the drip and followed all their protocols – checked all my vitals and monitored me for a while and really reassured me. I was also very lucky to have a lovely friend with me who was amazingly calm throughout it all, which is exactly what you need and therefore helped me to feel calm too. Eventually the pain stopped and we continued with the infusion at a slower speed – so instead of it taking 30 minutes, it took an hour.
I then felt perfectly fine – I even managed to take my drip stand to the loo – something that I’ve always been very envious of other patients doing – as I always felt too scared to try it. But on this occasion, my need for a wee definitely trumped my worries about trying to manage to”drive my drip stand to the loo”! I felt very proud of myself for managing to have a wee one handed without getting tangled in any tubes or accidentally pulling anything important out !
Chemo then followed the immunotherapy for another 30 minutes with no more dramas and all was well. I’ve been prescribed some antihistamines and other medication to take 30 minutes before the next round of immunotherapy at the end of January to try and prevent the same reaction which is very encouraging news.
But it was a stark reminder that anything goes when it comes to this cancer lark – you just never know what is going to happen next. Sometimes it’s very positive – like receiving amazingly fabulous news about your tumours shrinking and sometimes is not so positive – like having a strange reaction and panicking you are having an allergic reaction and might die!
Handling the Highs, Lows, and Everything In Between
The highs and lows can feel unrelenting, but I think it’s important to see them as they are and to know that some days will be great, some days not so great. And each is temporary and all you need to do is take one day at a time, get through the not so great days with hope and optimism that better days are coming.
It also helps to be mindful that progress is not always linear, that sometimes you take a step backwards to take a step forwards. And on those days when you are taking a step backwards, to not lose sight of all the positivity and the things that you have accomplished and achieved and to feel grateful that maybe you are just where you need to be today.
Each time I have had my chemo reduced a little, I have fretted (I explain a little more about this in this blog post). My specialist nurse explained on Monday that it’s very common and it’s quite normal to start on 100% and have it later reduced to 70% or 60% – so actually I’m doing really well sticking at 80% !
And I think it’s important to remember that it’s okay to not feel okay! To not feel guilty about the lows or to feel pressured into feeling positive all the time. So on the days when I’m not feeling so great, I cut myself an awful lot of slack and give myself permission to feel sorry for myself when I need to ! Knowing that it’s temporary and eventually I’ll bounce back with a big smile and plenty of audacious hope for better times to come.
