Every scan, every check up is a mini rollercoaster. The anticipation, the preparation (the tests and scans), waiting in the waiting room to see the doctor, the review with the doctor and then hopefully the relief that is all ok – all is stable – until the next check up.
My late husband, Mick, had a lot of check ups on our ride together on The BIG rollercoaster – the The Brain Cancer Rollercoaster. Mostly, the check ups were monthly. I think it was better when they were bi-monthly or tri-monthly because they gave us a little breathing space and a little bit of time off the mini rollercoasters.
One of the challenges of a serious illness such as brain cancer is that you can have a team of specialists who all review your scans and results. In Mick’s case he had
- a neuro surgeon (who removed what cancer he could),
- a radiation specialist (who set up 6 weeks of initial daily radiation treatment with the aim of making the cancer cells weak enough for chemotherapy to have an impact) and
- a chemotherapy specialist who became the lead doctor who co-ordinated with the others. She was our main contact.
At each check up we met with the chemotherapy specialist. Sometimes we also had separate appointments with the radiation specialist and neuro surgeon as well. We were grateful to meet with each one but adding more appointments into the mix – added slightly different views (some more positive than others). Extra appointments meant extra anxiety and nerves as we waited in each waiting room with other seriously ill patients.
We thought that we were handling each of the mini rollercoasters ok, that we were all right. We acted calm beforehand, measured at the time and then bravely updated our parents and friends afterwards with the latest results. But then a day or two after a check up – when we were exhausted and found it hard to engage with our little kids – then we would realise how draining the past few days had been.
Remaining calm, listening and processing all the information, our questions and our fears required a lot of emotional and physical energy. As soon as we left appointments or sometimes during appointments I would send text messages to our parents who were minding our little kids to let them know that – “all is ok for now – more information soon”. We knew they would be on tenterhooks too.
Of course everyone cared and had questions so post the appointment we would go over the latest details again and again with each set of our parents and then our dear friends. Over time we began to realise that a short email outlining the key points worked better for us. A short email that said – thank you for your love and prayers, here is the latest and in the nicest possible way: please don’t ask any more questions because we are done talking about it for now. Mick even started being vague about the dates of upcoming scans when friends asked him – because it was easier for him to just focus all his strength on preparing for the scans rather than communicating as well.