I don’t know what it is about Wednesdays. I took my usual two trains and a bus to the Churchill in Oxford today for a consultation. This was a cursory once-over, chat with the clinical team and blood test before I receive the next load of cells from my sister next week. They like to give you a clean bill of health before injecting you with any foreign matter. Then, as if part of some crazy charity challenge, I drove, after a couple of hours at the office to raise team morale with my usual sparkling wit and repartee, to Bracknell to collect Katie after her fourth round of chemo. If anybody remembers those saccharin “Love Is…” cartoons from the 70’s, then, for us, “Love Is…being in different cancer hospitals 35 miles apart”.
Katie’s day started earlier than mine with a blood test at 8.30 in Bracknell to ascertain whether she could have chemo today. A couple of blood counts from a test earlier in the week had looked a little on the low side so there was a chance that chemo would be postponed. Of course, it’s all relative and I scoffed at the meekness of delaying treatment with a neutrophil count of greater than 1. Greater than 1? Try walking around for 6 months with a score of 0.3 – that sorts out the men from the boys. If sorting out the men from the boys is avoiding as much human contact as possible, going through vats of anti-bac hand gel (sensitive) and yelling “don’t breathe on me I’m immune suppressed!”.
Katie has stood up well to treatment so far. We’ve had to make some adjustments at home, I do most of the catering, cleaning and bunny care these days. In the past, at least since my career break post-treatment, I have done most of the bunny care, catering and cleaning. I’m sure we’ll get the hang of the seismic changes to our routine eventually. The only really bad side effects Katie’s suffered have been insomnia, nausea, fatigue and inflicting Bon Jovi on her Facebook followers for 63 straight days (and counting) by posting a different song every day since treatment began. It’s been a unique way to share the suffering.
The good news is that Katie’s first scan since treatment started showed a reduction in the tumour in her breast. The radiology team inserted a marker yesterday which lets them identify the location of the tumour making it easier to spot in subsequent scans. The other good news is that my blood scores, after 18 months of stubbornly refusing to move have suddenly sprung into life. My chimerism, or the percentage of blood in my body produced by my sister’s bone marrow, which had been hovering around the 40% mark, is now at 60% which is good progress and a huge relief. The point of the bone marrow transplant is to get to 100%, giving me a new immune system which should be better equipped to deal with a return of the Hodgkins. The two results (Katie’s scan and my bloods), or at least the process of getting those results encapsulate the uncertainty of living with cancer or its aftermath. You go for the scan, try to ignore the subconscious build up of tension while you wait for the results and then, hopefully, experience the huge rush of relief when the results are what you were hoping for.
I’m hoping next week’s dli, or top-up of cells, will be my last and I’ll hit the magic 100%. Chemo-wise Katie’s now in the finishing straight. All being well with blood counts she should be finished 6 weeks today. Katie well then get a few weeks of respite while she recovers before surgery. There will no doubt be a post surgery recovery period, but with luck, treatment for both of us will be finished by the end of this year and we can start to look forward to a cancer free future.
We’ve tried to enjoy the days between treatment when Katie’s felt well enough to get out and about and experience some vinotherapy. It’s inevitable that cancer, at best, puts your life on hold, so it’s important to minimise that as much as possible by making the most of the good days. But then, I suppose we should all be doing that anyway even on days spent shuttling between different hospitals. I’ve got to know some great people over the past couple of years, who’ve had a variety of different blood cancers – some we’ve lost already and some who won’t be with us for much longer. I think of them all a lot and, perhaps, those of us who’ve made it this far through treatment, or post treatment, owe it to all of those who haven’t or won’t make it, to live life that bit better.