What a week.
So, let me summarise the state of play regarding treatment.
The number we are aiming for is zero.
Potted history of Myeloma
Myeloma is the overproduction of mutated plasma in the bone marrow that squeezes out all the other good stuff (red blood cells, other white cells and good plasma cells that fight infection)
The mutated plasma produces what is called a paraprotein. It is this useless protein that damages bones and is a key indicator of myeloma.
- On diagnosis, 22nd May, my paraprotein figure was 56
- On the 6th June, it was 72
- Today it is 74
Not heading in the right direction (anecdotally 40 is deemed too high) however, the rate of increase (from 56 to 72 to 74) has plateaued so hopefully this means it is starting to get under control. That said the Doc was expecting a drop rather than a slight increase so they have doubled up the dosage of all the key drugs to try and force a reaction. I’ll find out next week if that has worked and if not, a new course of treatment will need to be planned.
Other side effects of note are my taste buds have disappeared; everything tastes of water. Boring but I still have an appetite so I’m not wasting away just yet.
And at 0200 Thursday morning, Tyson and Lewis made a comeback for an underhand round 3 of bareknuckle barbarity. Brutal, but this time I had a Beardsley and a Kaye in my corner to fight back.
Let me introduce you to the good news of this week.
It’s at this point I want to say thank you to each and everyone of you who has picked up the phone, sent a message and just been within ear shot since this all kicked off. You have kept me positive and motivated to stare down the barrel of this and say with confidence that I will not be beaten. Your support is beyond humbling; I am not eloquent enough to articulate my feelings to you all in this post but please know that without your support, facing this would be a very different prospect.
So, I get an email from my mate Rhys who did the Ironman with me last year (Have I told you I did an Ironman in 2016! I don’t like to talk about it.. :-)) and it had the following audio attachment from Paul Kaye, the global voice of Ironman! He is the guy who announces your arrival onto the red carpet..he’s a bit of a big deal to those in the know.
This. Blew. Me. Away. (and made Jenn cry!)
What a guy to do this and what a boost. But more important than even the message was that Rhys took the time to even think about doing this for me. As with all the messages I have received from you all, your consideration and friendship is what is most important to me right now.
And then the Beardsley no more than 12 hours later!
As a life long Newcastle United fan, local hero’s don’t get much bigger than the great Peter Beardsley and he picked up the phone and called me on Thursday morning for a chat to see how I was getting on!
Again, another friend who will remain nameless because he does not like the focus, got in touch with the club and the below letter arrived from the great man a few weeks back.
As if thats not enough, at 0830 I’m sitting at the breakfast table, chatting to the guy about life, the Toon and getting invited for a guided tour of St James’ Park with Pete (we are on mates name terms now!) the opening game of the season vs Spurs! What a guy.
And then, if he could not be any more decent, mentions that he is in Whitby for a tournament with the reserves and would my parents like to be his guests at the game that evening! Class is permanent.
Incredible, life affirming and its all thanks to you guys being so considerate and just brilliant friends.
So a crap news week regarding the treatment not working was turned on its head. I go in today for dose 4 of this round of chemo then I have the next 2 weeks off which I am looking forward to.
I’ll have more blood tests next week which will (hopefully) show a reaction to the new dosage but if this program is not going to work, we try something else.
In summary, you guys rock. Your support, love and friendship is mind blowing. Despite the underlying reason for all this, I am very lucky to be able to call upon you all as friends.