Steps to recovery #7 – managing my mental health (looking back) 👀 🎢

A huge topic that moves away from challenges of my physical recovery. Some aspects have overlapped but keen to initially look back at what I have faced and the lessons I have learnt. Then will do a separate post to look ahead on managing this difficult area moving forward. Sorry if this ends up being a long one! This one is unashamedly for me.

I guess roller coaster is the best description of the last 6-9 months. As an avid reader of the chimp paradox I am aware how this impacted my emotional response and put me on heightened alert. So managing that emotional response has been key to aid my underlying positivity and my physical recovery. Allowing me the slack for the down moments.

My initial response was denial. Trusting that my leaky bowel was “one of those things”. Today I am ready to listen and react rather than leave it to hope

My emotional response to being told I had cancer was calm. I think it helped seeing the tumour on a screen at the initial colonoscopy. In some ways quite detached – waiting for the “so what”. For me, being told I had cancer didn’t lead to a crash. Worried but no panic. I still vividly remember a “house meeting” to share the news with the 3 kids at home around the breakfast bar. Their calm response (worried but controlled) really helped. Good questions that got me thinking. Managing my update with mum in person with the help of my brothers.

In truth, for the next few weeks the fear was there. My approach was to crack on with work, share with only a few people and wait for scans to confirm. Looking back it was the right thing to do but I see now that my attention span was diminished.

The worst time pre-Op was the after the initial 2 scans. The need for a PET scan to check the spread (or not). That opened up a can of worms in my mind. The first time I jumped the queue using BUPA. Even going to a new scanning centre in Watford added to the newness of the situation. I remember being on ultra high alert. The scan was fine. Was quite cool being told I was briefly radioactive (sadly no superpowers appeared). 😀. I could then park the feedback and enjoy a holiday. A much needed break that helped keep me stay calmer.

The planned day of the results was a shocker. I had expected to go into Lister on a Wednesday. Two calls that day – one to ask me to wait and not come in, the next to postpone the feedback 24 hours! Panic set in. In my mind I had set that day as the day for answers. I had stayed calm knowing this. Those 24 hours were not great. Spent the afternoon in bed – my chimp in overdrive. “What if’s” filling my head…..

The next day and meeting with Mr R-J for the first time. The news of straight to surgery, no radiotherapy. That there was no spread. After a check then a “yes” I would need a stoma for life. But certainty. A calm manner. Some choices on private versus NHS but a clear path forward.

So I learnt a valuable lesson. Don’t set expectations ahead of meetings!

Post-op the physical has dominated proceedings. Keeping a positive (but not blinded) approach has been key for me. As has acceptance.

Acceptance of a stoma, acceptance of my physical weakness, acceptance that I need to take time to recover, acceptance that I had a damn big operation and will be in pain! I will come back to acceptance as I look forward.

Good news helps. The fact that all nodes were clear was huge. My approach to that review was a lesson learnt. I met Mr R-J with an expectation that no results would be available or that at best I would move to chemo with some nodes impacted. Clearly the news was the other way around. It took me a week to finally accept that news – once I got it in writing. Even now I still worry about the first scan in 5 months! And that is fine. I have learnt I can’t shut down worry. I need to listen, talk it out and blog it! Chimp management! 🐵

Managing my ongoing pain is difficult. Getting used to the fact that pain is constant even if it can be reduced by tablets. I still can’t sit up, I have to walk slowly and build up my distance. Recognising that this is frustrating is fine. Patience is never easy. Knowing that the pain will go is the logical response but sadly logic isn’t always in charge! The support of the stoma team is critical. Their reassurance on recovery is fab. Knowing the warning signs if an issue is coming. Saying I am on track and that it will take time. The support of family and friends is huge. Without their support I would be a mess.

This blog helps. Putting down my thoughts and fears. Positive but realistic. I have never been one to do things quietly 💥🙉

One final thought. At the very start of this cancer journey I made a call to always be kind to staff and anyone involved in my care. Even if I was feeling grumpy, felt they were late (mostly in my head) or just busy. A smile 😃 A thank you for the simple things 🙏 . A simple acknowledgement of their support. Even in the down moments of which there have been plenty.

These are amazing folk doing the best they can. Surgeon, Doctors, nurses, orderlies, porters, cleaners, catering teams. I could go on. Giving all of them all the respect and love they deserve. Has it helped them – I don’t know? Has it helped me – for sure. The returned smile, the warm care. Doing the same for the family and friends. Helping them help me to get better. ❤️‍🩹

It’s certainly been a challenging ride for my mental health. I am sure there will be more ups and downs to come – bring it on!!!

🎢🎡🦄😀