Never figured it would happen to me. But it has. In June I was diagnosed with Follicular Lymphoma – a slow-progressing form of cancer that I might have had developing for perhaps 3 years (based on some symptoms). Or maybe even 15 years (based on some other symptoms). No one knows.
Things came to a head around June 13 – 20 when over a few days my normal twice-daily bowel movements ground to a halt. Lots of water, herbal teas and epsom salts produced minimal results and the pain was getting worse as the days progressed. So I headed for a GP who admitted me to hospital for scans. After that, the story gets a bit complicated with many turns… and a lot of it is now a blur… but, while medical laxatives began to produce some movement and allowed me start eating again, the medics went about their ultra-sounds, CAT scans and biopsies.
They discovered my issues were being caused by hundreds of abdominal lymph nodes swelling up and squeezing on my intestines and thereby stopping my bowel movements and peristalsis. Not only that but the steadily increasing mass of nodes was also slowly closing my ureters causing my kidneys to enlarge under the back-pressure (even though I’d noticed no change in urinary habits, blood results showed high creatinine levels and the consultant told me kidney function was down to about 60%).
But there was a chink of light: my colon and other organs were clear of cancer. So I figured that, in time, I could use diet and lifestyle change to reverse it all.
But there wasn’t time.
My gut was telling me this. Literally and intuitively. I just knew there wasn’t time. Even though medical laxatives (bless ’em!) had got me back to a much-appreciated once-a-day habit. Because the cramping pain and terrible hardness in my abdomen were getting worse.
So I felt I had no option but to take the offered chemo. And I’m glad I did. Because it was a close call (as those of you who saw me in hospital, so weak I could barely talk, already know). Without that chemical intervention I wouldn’t be here right now. This was confirmed by the medics who later told me that in the space of just one week (when I was trying my best with lots of green foods at home) my blood LDH levels had almost doubled from an already dangerous high of 600 to 1111 in just those few days.
Where are they now?
Along with other improvements in my blood (including red blood cell counts, more ‘normal’ levels of white blood cell levels and normal creatinine levels – indicating kidneys are functioning well) a blood test on Monday last showed LDH levels below 600 again. That doesn’t mean I’m in the clear just yet though as they’d like to see them drop well below 400. But it does mean the chemo, for now, is producing the desired effect.
I say ‘for now’ because it turns out Follicular Lypmhoma cannot be cured with normal chemo. Apparently they best they can do is ‘knock it back and hope it behaves itself’… and if it doesn’t? Well their only other suggestion to date has been bone marrow surgery. But the oncologist doesn’t want to go down that road given the high mortality risk of the procedure.
Not thrilling news as you can imagine. But my energy levels are now way higher than they were a few weeks back, and the small lumps along my ribs and neck are even smaller than last week (some have entirely disappeared). So I am hopeful that the next blood test, scheduled for Oct 3rd, will show a further drop in LDH levels… and that my two remaining bouts of chemo will see them settle even lower… and that diet and a new way of living can do the rest for me. In that regard I am particularly cheered by the news that some people have been enjoying life with Follicular Lymphoma for over 25 years 🙂
Meanwhile…
… I hope those of you who were puzzled by my extended silence can accept it was not in any way personal. Be assured that as my mental, emotional and physical energies recover in the coming months, I will start to follow-up and make contact again.
This however does not preclude you in the meantime reaching out and making contact with me by post, email or phone. Far from it. Because all those cards, voice messages and prayers and more are helping and are appreciated. But please don’t expect an immediate, or indeed any response, for now.
Because my priorities right now are eating, sleeping, gentle exercise, rest and quiet time…
