Sue Vincent's Daily Echo

It has been a weird few weeks. It started well enough… Three of us actually sat and talked through one day’s whole treatment. That is highly unusual… few people seem to want to talk in the chemo suite.

The usual side effects from the third batch of chemo were not too bad, apart from the fatigue, which was, and is, worse than debilitating. It is not like any fatigue you have felt before, but you feel as flat as a pancake to begin with, just from your body’s attempts to resist the cancer, then the chemo laughs and sucks out any remaining energy from every corner of your being. A vacuum cleaner with that level of efficiency would sell by the million…

The unusual side effects, came from the second round. The extravasations… where the chemo leaks out of the drip and ito the surrounding flesh. Some of the medications dissolve muscle, apparently… and you can end up needing treatments up to and including amputation. I had one on each hand and they were still playing up. One had been caught, treated early and inspected daily. The other, which had looked worse to begin with and had not been caught or treated at all, had been ignored. It didn’t approve, waited until after the third cycle of chemo, swelled up in a lump and went red. At the same time, I started feeling ill. I was a tad worried.

I called the specialist nurse… was called in to see the medics, who looked at the hand and sent me home with steroid cream. The feeling ill bit slipped under the radar. A follow up call and appointment were arranged though. I also got a letter through which detailed the full extent of the cancer for the first time… and it was scary. The worst ratings on the TNM scale, extensive stage, because it is metastatic and invading everywhere including the lymph nodes, cancerous fluid on both heart and lungs… and a squashed pulmonary artery.

It is enough to get you down a fair bit, wondering if all of this is going to buy you back any worthwhile time at all.

Then I had my scan… the one to see whether the chemo and immunotherapy was actually working.

I kept on feeling ill. But when the oncologist called a week and a half later, it was with very good news… the tumours were shrinking. Had shrunk, in fact, by up to half in places…!!!

That was unbelievable! I was bouncing… but only mentally. I didn’t feel as good as I thought I would on such news.

Next day, I had the follow up appointment for my hand. I had spoken to the oncologist the previous day… and finally got across the ‘I am not well’ that had been worrying me for so long. My face and torso had swollen obscenely. The first thought was that the steroids were to blame. I had stopped them weeks earlier, though, and taken diuretics for a fortnight and was little better. And I really felt ill. I had been sleeping up to seventeen hours a day, on and off, and had been pretty much useless for the last week.

The doc looked at my notes… “Hmm… good news. Congratulations on the tumours shrinking.” I had a long list of questions about those scan results… but didn’t get chance to ask any of them. “You are not well,” said the doc looking at me for the first time and noticing how breathless I was. He prodded, poked… and pcked me off to Accident and Emergency.

So much for the ‘high’ of shrinking tumours…

I spent the rest of the day and all evening in the same room where I had been almost killed between a spider bite and an allergy to the antibiotics they gave me to combat the bite…

Which was less than reassuring.

Shrink the cancer only to be killed by the side effects? Hmm…

Blood tests, another scan, ECG… you name it. But apparently the swelling is not being caused by blood clots in the lungs, a squashed vein to go with  the squashed artery, or any of the other potentially lethal nasties they were looking for. And apparently a resting heart rate of 110+ beats per minute is nothing to worry about either… for a cancer patient.

As a cancer patient with a DNR … a ‘do not resuscitate’ signed and sealed…  I beg to disagree. I chose to go with the DNR because, if my heart gives out, it will be because it cannot cope with the cancer any more. There is no point in putting me and my body through the hell of CPR to bring me back to face a recurrence because my body still cannot cope. Death is not the enemy… it is a natural end to the process of life. We can do so much to extend life or save it… but there are times when we should perhaps leave well alone.

Anyway, they eventually sent me home. After filling me with steroids by the handful, sticking me full of blood thinners and bruises and doing another CT scan.

By this time I was shattered. The five mile drive home seemed like climbing Everest and, although I’d missed meals and was dehydrated, tea and toast constituted dinner. I was utterly exhausted.

But then, I looked at my discharge letter… in the week and a half since the previous scan, the tumours had shrunk even more than the percentage I’d been told!! Basically, from tumours the size of say, large jam doughnuts, we were now looking at walnuts.

I couldn’t muster the energy for a wild celebratory dance, but I did one mentally. This has to be excellent news!

Even if, at the back of your mind, there is the doctor’s voice warning you that with small cell cancer, it responds very well to chemo for a while. Then it stops working, for no reason anyone can fathom, and you deteriorate fast.

And that has been the past few weeks. Up and down… as fast as a rollercoaster ride. You do not get time to celebrate the victories… even though this is not a battle, but a trial of acceptance and peace. There is little time to bemoan the down days before something positive can happen… largely because you sleep or sleepwalk through them and it takes something positive to wake you up. The goal is impossible… and yet you walk towards it anyway, believing and wondering if you will make it, both at the same time.

It is a rollercoaster of uncertainties…and as Mary suggested, someone should be researching the effects of uncertainty on cancer patients.

As for me, I have never been a fan of rollercoaster rides…