12/04/25 Surprise...

Had my pelvis MRI, no problems. But when I came out and checked my phone, there was the inevitable Gmail message about my email to Basildon Haematology HQ: "The recipient server did not accept our requests to connect".

In other words, the email address on the Dental Review form is just as useless as the telephone number. What a surprise!

11/04/25 The saga continues...

 Of course it couldn't possibly have gone smoothly...

This morning I had an appointment with my dentist to fit a new crown after root canal treatment last week. I took my Pre-Bisphosphonate Therapy Dental Review Form with me and gave it to him. Being the thorough and efficient dentist that he is (and far and away the best time-keeper ever, I rarely have to wait even a minute beyond the appointment time) he took a couple of new X-rays and compared them with my last ones before announcing that I have two teeth "requiring investigation" - one will need an old filling replacing and a possible crown, the other will be a new crown and probably a root canal job. So I went to reception to make an appointment. First one available was in June, meaning a delay of at least a month and probably more before being in a position to start my 2nd line treatment.

I was not pleased, but nothing to be done.

So I tried to contact Haematology at Broomfield Hospital to talk about this. Every 'phone number I have - reception, Clinical Nurse Specialists, Secretaries - didn't work. Either cut off immediately or "This number is no longer available". I tried the hospital's main reception and they gave me a new number. "No-one is available to answer this call".

I found some contact details on the Dental Review form for the centralised Haematology service in Basildon. I 'phoned the number. "This number is no longer in use. Goodbye".
So I wrote an email and sent it off. At least that hasn't bounced back as "Undeliverable, address not recognised" yet, but I won't be surprised if it does.

Then it was time for my regular online backgammon game. And while we were on our second game I was interrupted by a 'phone call from the dentist. He's had a cancellation and can fit me in at the start of May, just a week before my next haematologist consultation when I hope to fix the details of the new treatment. And I'll have had an MRI (tomorrow) and a CT (next Wednesday) by then as well. So, after after something of a roller-coaster day when I have several times felt like throwing my phone across the room or out of the window, all the pieces have fallen neatly into place. Sent an email to cancel the first one. But why do we have to through all this frustration?

10/04/25 Good news (sort of)

In the immortal words of Etta James - At Last....

From today's post in the Facebook Myeloma UK Support group:

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"It looks as if the long and frustrating watch'n'wait is over. Today's blood numbers (five weeks after the last set) show PPs up from 10 to 18 and the FLC ratio up from 17 to 31. Not quite the doubling that my haematologist was looking for, but close enough. I was also able to offer her two possible symptoms - bone pain in the back rib cage on the right (where I had a previous lesion) and a left hip issue affecting proper movement - very similar to the problems caused by an "extra-medullary mass" i.e plasmacytoma five years ago.

I now have an MRI pelvic scan booked in two days time, and a CT skeletal survey in the middle of next week. Once the results are in we expect to start second line Dara, Velcade and good old Dex. She now seems confident that she can present that to the funding people (meaning that my years of Len&Dex "consolidation" don't count as a separate line of treatment). That's good news.

After five years of remission I suppose it's inevitable that a stupid part of the mind thinks "it'll never happen to me" and "maybe I'll be the first myeloma patient who never has a relapse" even though the rational part knows that's not the way the world works. But now there's the hard reality that I'm just like everyone else and the future will be filled with more repetitions of relapse/remission. Nothing there that I haven't known for years but today it's a bit more real. I expect those reading this and further along the road will know just what I mean; those who have never been diagnosed with a remission/relapse cancer will never really see the same view of their future.

Enough of the philosophy. I'm just glad the nine months or so of feeling helpless while watching the PPs drift slowly upwards then accelerate are over. We're going to do something, and my aim is to blast all those mutant plasma cells into oblivion just as quick as we can.

Have a good day, what's left of it. Keep positive!

Finally, my haematologist plans to start me on a new course of bisphosphonates (Zometa). I queried this, as my understanding is that once you've had 24 treatments or two years of it, that's it for life. But she says "new line, new Zometa". Have others had that?"

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After that, tea, coffe&walnut cake, and a walk in Galleywood Country Park on a most beautiful spring afternoon: