Update on me

I have Non-Hodgkin’s Lymphoma.

It started with a bleeding stomach ulcer, in May. I had a gastroscopy at the end of June and a CT Scan in August, which were followed up with a second gastroscopy, an MRI and another CT Scan in December.  The ulcer was situated on a small lump in my stomach.  Until the start of November, I felt well and healthy; after that I started getting sicker and sicker. I was diagnosed at the end of December, based on biopsy results from the second gastroscopy.  On 17th January, I was so ill that I was admitted to hospital for almost 3 weeks.  Poor DH was by my side for the whole thing.  He was worried sick and only left my hospital room to go home to sleep.  (After I was discharged on 5th February, he was so knackered that he slept for about 20 hours.)

I’m still shocked at how sick I was.  I realise now that I was close to death.

As well as being a lump in my stomach, the lymphoma was in my liver, kidneys, right shoulder, chest and pancreas. I had no energy, no muscle tone (I’d struggled to climb the stairs at home), no concentration, and was swollen with fluid in my legs, abdomen and lungs.  At one point in the hospital, I was carrying 20kg (44lb!) of excess water.  The hospital even put me on oxygen. I wasn’t hungry and struggled to eat.  Over 3 months, I lost over a stone and a half in weight. (That’s 21lb or  9.5kg.)

I had my first round of chemo in the hospital and immediately started feeling better.  The miracle happened two weekends later, when I woke up on the Saturday and suddenly felt “normal”.  I had energy and an appetite, and could knit and read, neither of which I’d been able to do for weeks.  Ironically, the night before, I’d been so deeply asleep that the nurse struggled to wake me for my obs and nearly called a code. (I was dreaming and he’d been incorporated into my dream.  It was only when DH’s voice cut through the dream that I woke up.)  I was discharged the following Monday.

My treatment is 6 rounds of chemotherapy, consisting of 4 separate drugs, on a 3 week cycle.  I had my third round last week and, beyond chemo screwing up my tastebuds - again - I’m feeling good.  Seriously, my biggest frustration is that I can’t taste coffee.  My taste for it does come back towards the end of week 3 in the chemo cycle, so it’s not permanent but meanwhile I have to drink tea.

Of course, it’s not just coffee that I can’t taste at this point.  The lack of taste applies to most proteins, making meals tasteless or just taste of one ingredient, e.g. vinegar in Hot & Sour Soup (which should taste of chicken and didn’t).  It’s totally off-putting.  I can, however, taste Vegemite.  Yesterday’s snack:

Other side effects that I’ve experienced are peeling skin and, of course, beyond a few determined strands, I have lost most of my hair.

Still have my eyebrows and eyelashes though. (NB:  I had the length cut off, a few days after my diagnosis, and donated it to the Little Princess Trust, who make wigs for little girls undergoing chemo.  Might as well make something good from my situation.)

I’ve been home for 5 weeks now and spend my days watching television, knitting, listening to podcasts and reading. We go for a walk every afternoon and I cook dinner most days.  I go to the hospital every Monday, either for blood tests and a dressing change to my PICC line or those plus chemotherapy.  A chemo day is at least 5 hours long, so I have to make sure I have enough to read.  I’m working my way through Dorothy L Sayer’s Lord Peter Wimsey novels in publication order - although initially I reread Gaudy Night - and am currently on book 6, Five Red Herrings.  

Work-wise, I’ve been signed off sick for 6 months by the hospital, so will return to work at the end of July.  I’m still burning up my sick leave at the moment and won’t be on Statutory Sick Pay until April.  It’s £116.25 per week, which isn’t much - less than the UK half minimum wage.  Fortunately, we have plenty of savings so can easily cover my share of the bills.

- Pam