I started to write this post in our local hospice on Wednesday of Holy Week.
Don’t worry, I’m not at death’s door or anywhere near. I’m waiting for Mel who is having her regular family support appointment here. Then we will be driving up to The Royal Marsden Hospital in London to talk to a researcher about a cancer genetics study which I’ve been invited to take part in.
Sitting in the hospice has prompted me to reflect on how I am coping. After all, I am likely to spend more time here in the future – it may also be the place where I will eventually die.
I have now finished my cycles of ‘early chemotherapy’ plus two courses of radiotherapy. On the positive side, my PSA has come down from the 300’s to the teens. On the less positive side, the news from my latest CT Scan was mixed. Some mets (tumours) have shrunk, some have grown, and there are some new ones. Not quite the spectacular success I had hoped for.
The side-effects of chemo are fading, although some less than others and I am wondering if the tingling I feel in my tongue and fingers might be permanent. The pain in my pelvis has returned after my first course of radiotherapy had successfully knocked it on the head. Back pains are also more established.
One of the intriguing questions now focuses around which of my current symptoms are because of chemo and which are there because of the cancer. My month signed-off work is drawing to a close and I need to decide if I feel well enough to go back.
The biggest challenge is a psychological one.
I have completed the initial treatment which was recommended when I was first diagnosed and now almost all of it will stop. From having appointments once or twice a week for treatment, blood tests, scans and consultations, I now enter a new phase in which I will only see someone every 2or 3 months. As long as my PSA keeps down, I won’t need the more intense treatments. When it starts rising again, my oncologist will talk with me about what’s next.
This should make me happy and indeed I am happy to have finished chemo. I am happy that my PSA numbers have come down. I am happy that I should be able to live a relatively normally for a while…
...but I’m also scared.
While the treatment was full-on, it felt like everything was being done to fight the cancer, so I felt like I was fighting it too. Now that I am entering a more relaxed stage, I feel like I have been parked in a side bay. I feel quite alone and in danger of slipping into depression. Getting over the initial shock, fighting the cancer and being determined not to give up has kept me going for the last 6 months. Over the last few weeks I have started to feel this determination ebbing away.
It makes me reflect on the psychological stages of living with cancer. For me, they have been as follows:
Chapter 1: Initial shock
The panoply of tests, scans and biopsies to see how far it had spread; waiting for the results; the mixture of shock, denial and endless questions when they came back; slowly adapting life expectations, plans, hopes and dreams as reality sets in; telling family, friends & work colleagues and managing their reactions to the shocking news.
Chapter 2: Full steam ahead
Getting used to hormone therapy, radiotherapy and the cycles of chemo; the regular round of doctors, nurses and specialists asking me how I am coping; the hope that the inconvenience and side-effects are all worth it; the determination to get through each day, each cycle, each phase and carry on with life as fully as possible.
Now I’m in Chapter 3
I’m not sure what to call it yet but it feels like a big let-down. Apart from the hormone implants, I will have nothing to steel myself for. Every few months I will have a blood test and wait with baited breath to see if my PSA has started to rise. The intensity of chapters 1&2 and the adrenalin which went with them is gone. Its bit like the morning after a great party, when everything is silent, and you are on your own again, nursing a mild hangover.
I have already seen the clouds of depression circling overhead. I am less likely now to respond to messages from friends, preferring to be on my own. That’s not helped by feeling tired all the time. It would be so easy to slip into the deep padded cushions of apathy and give up. I have suffered depression before, and I know the signs.
The challenge is to adapt to this new pattern without succumbing to the cloud’s dark shadows – to take advantage of the lull in treatments – to live a little more instead of a little less.
I finished writing this post in the afterglow of Easter.
Circumstances did not allow me to join in the events of the Passion this year. Maundy Thursday was spent at the Royal Marsden Hospital and Good Friday driving back to Dorset. But yesterday in our village church, the joy of the resurrection broke through the gloom. I found myself looking at the stained-glass window of the risen Christ, knowing that now is the time when our faith bears fruit. After everything was thrown at him on the cross; after he was laid in a dark, lonely tomb; after all hope was lost, he rose again! Life once more entered the darkness and dispelled it with light.
His resurrection gives me hope. I will not succumb to the dark clouds and I will ask God to raise me up again for this next chapter. Above all, I will remember his resurrection promise, “And surely I am with you always, even to the end of the age.”