Coming out on the other side of a tormented week

Way back in June I was told it didn’t look like my treatment was working any longer as the rash continued to spread across my chest and back, so I would now be handed over to the clinical trials team.

Yet the cancer hadn’t spread anywhere internally, therefore, I was petrified of coming off a treatment that had allowed me a quality of life for 2 years.

So the decision of which way to turn was agonising as I continued on my treatment, cancer still spreading, coping with the burden of making the wrong decision.

Then, at the beginning of September, my oncologist took one look at my skin and made the decision for me. I no longer had my safety net treatment.

So the clinical trial process was about to begin but my bilirubin (a substance in my liver) was way too high so I’d have to go back, 2 weeks later, to see if this level had reduced.

It didn’t.

Another reason I had to come off that treatment. 7 weeks later and blood test after blood test it wasn’t coming down until in the end (last Friday) the clinical trial doctor took me off the trial register and said he would have to refer me back to my oncologist to see if there was anything more he could do.

Well my mind went into overdrive. There was obviously nothing left for me otherwise he wouldn’t have referred me to the clinical trials team as I’d exhausted all other options. The trial was my only option and it had now been taken away.

A visit to the biggest hairdressing exhibition in the country, (which had been organised for ages) followed the next day, travelling down to London on the train and staying over for 2 nights, with hubby and all the staff.

There were 13 of us going and my hubby convinced me it would be the best thing to take my mind off what was happening. I was going to go and I was going to enjoy myself. I was determined.

And that I did until I had couldn’t bottle it up any longer and on the last day, I had a meltdown, alone in my room at 2.30am.

Then again, with hubby, the next morning.

I was dosing myself up with pain killers, exhausted from having no sleep, and had convinced myself that the way I was feeling was because I was dying.

And at the same time as having those thoughts I was also telling myself to practise what I preach and to stop worrying about the unknown. But no amount of self-talking was going to push these emotions aside. I was consumed, over-consumed; with fear which lead to me cancelling a long awaited dinner date with friends and then coffee at the gym, the following day.

A depressive way of thinking was creeping in and I couldn’t bear the thought of being in public and getting upset, which was obviously going to happen as it was so raw.

From last Friday to my appointment yesterday was the longest 6 days of my entire life.

Every thought was the worst. I couldn’t look at my kids, I had a parents evening looming.

Every experience I had, I related it back to cancer. I coped though because I had no choice. I had to. And all the time I was telling myself not to be so stupid, that these were only thoughts playing with my mind and that whatever gets said on Thursday, I can’t change.

So the appointment came and went in a blur. NOTHING I thought was going to happen, happened.

My bilirubin levels were now low enough and I was to be re-referred back to the Trials Team. It only took 2 months to come down!!!!!!

Why would I think it was going to budge in 6 days? So the weight of the world (which I openly admit, I created) lifted so quickly, I couldn’t get my head around it and I asked him to confirm what I was hearing.

That’s how much my mind had prepared me for the worst. So much so, my dear friend and therapist to my oncologist’s patients, Julie, shed a tear, along with me, as she could feel the huge relief I was feeling.

So yesterday I was like some excitable, giddy child who burst into tears at an unbelievable, emotional parents evening. And last night as I went to bed, I reflected on my week and thought, cut yourself some slack.

We all have wobbles. It’s allowed for whatever then reason. We are only human, whilst others may see us as super human, we are not.

But, it’s what we do about it to see us through, that’s important. I learned another very valuable lesson this week.

Whilst I kept it from people, didn’t blog, only told close friends, because I knew it was my own thoughts that were causing me to be so traumatised and that wasn’t me, so I didn’t want to upset, worry or even burden anyone with something I had created myself and needed to deal with.

But little did I know. People knew. They could tell. They could see the worry in my eyes. The fear engraved into me. And I thought I was a good actress!!!

So I do need to share my experiences with people to get me through and know I’m not going mad when I have these unfounded, thoughts. And as Lynsey McGrath would say, that’s all they are. Thoughts. Let’s find a way to be ok with them. Even when they’re not ok.

We are only human and it’s ok once in a while to be not ok.

Special thanks to Carl O’Neill, Natalie Haseldine and Gill Ainsworth for catching me when I fell this week.

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