Legs, jaws and The Fairy Mountain

Thanks to to Don and Sandi for good wishes. And for Sandi- by all accounts the second cycle on full steroid dose is the worst- certainly was for me and others so your dad is maybe going through a normal phase I hope and trust he'll pick up as the steroid dose reduces. Sure he will.

We are now in the Scottish highlands after a heavy end of the week and concern we might not get away. Good news is that I may not have osteonecrosis of the jaw and just a watching brief for now. But I was also at the diabetic clinic the same day and asked them to look at a my left leg which had become pretty swollen and tender- you- fears of a clot so sent for an ultrasound but no clot in sight. Called into my haematology ward next morning and suspected infection in my leg( the one with the pin in it) so given anti biotics to take on holiday with me and with alert that I should get in touch if no improvement etc as they didn't want the cost of a helicopter flight! Fortunately - seems to have been an infection and the anti-biotics did the trick. All appears resolved though I have to discuss with the orthopaedics as this seems to be a recurring feature of my tin leg- as they warned me it might be. But all well. Back on the steroids and usual raised blood sugars but again well controlled and I feel OK.

What is helping is that we are staying in a place overlooking Loch Rannoch and also Schiehallion- the Fairy Mountain. Maybe good vibes from the residents there!

5th Cycle here I come

Well it looks as if after all I'll make the 5th cycle of the trial- an unusual occurrence for me to get to the 5th cycle of any treatment. I'll start the cycle on Thursday and then Friday we are going away for a wee holiday. I'm to have my bloods done on Thursday to ensure I'm OK for the cycle but I know by how I feel ( remarkably well apart from recovering from a maybe broken rib) that there won't be a problem.

Thursday proving to be an eventful day- Cycle 5 process starts; followed by Diabetes clinic ; followed by Maxillo facial guys in the afternoon. I'll need a holiday!

Pipes and pipes

Waiting to hear if I'll stay on the trial or not. Interestingly- mixed feelings but I trust the team at WGH enough to run with whatever decision they/we make.

Meantime leaking solar pipes now fixed and all up and running except for one thing- no sun!! Also, now have my electronic (bag)pipes so I can pick up playing the old tunes again. As soon as I got them this morning I was playing them- amazing( isn't it, Grace(a joke?)) how the tunes can stay in your fingers but if you asked me to write the music or whistle a tune I probably couldn't do it. First tune I had a go at was " Invisible Dram" ( dram being Scots for a measure of whisky)- I wrote this tune for Elspeth's dad- every year we gave him a bottle of whisky for his xmas but we never saw any of it!! Hence the Invisible Dram!

Eh?

News today- would you believe that my paraprotein is back down to 9 from 11. So with the treatment it was going up and after withdrawing from the trial its gone down again. Roller coaster time again. So issue is- does this merit staying on the trial? Will I be allowed to in terms of trial protocols? I think I did say the most annoying thing about myeloma is the uncertainty it introduces into life. I've had to accomodate this by realising that the most certain thing about myeloma is the uncertainty! I'll find out on Monday what plan of action is to be and meantime will go and lie down in a dark room and recover my energies!

But the really important news is that my solar panel is working well- the collector reached 74 degrees yesetrday and the hot water cylinder went up to 64 degrees. And all this for no cost ( I'm a Scot!). Next plan of action is to get back to playing pipe music- I gave up when my left arm was plated- too much pressure on a vulnerable elbow. But I'll buy eletronic pipes again( in fact they were ordered two hours ago).

Blogging on.

You can't get rid of me that easily. Decided to keep the blog going since my failure to continue is of course part of the trial " results". Also had some supportive emails from folks asking that I keep it going. So I will! In any case we've now had 1911 unique visitors- I want to reach the 2000!

Post Clinic Thoughts

Elspeth and I have now had a think about life and the universe after the news at the clinic last week and the main important conclusion we've come to is that we might in fact buy a twin coil solar cylinder to boost our solar system!.

In terms of other issues- particularly leaving the drug trial and my rising paraprotein, we'll do as we also do- concentrate on making sure we make the most of what time we have now- both personally and also in terms of keeping some work going. I'll find out in a months time just how fast the myeloma is progressing and we can make a better decision then with the WGH team about what options remain. So we'll wait til then and focus on other things for now. I do of course think over the future etc and what might be..... but I've never let the myeloma stop me doing things. As I've said all along- my TMTMTM principle ( There's More To Me Than Myeloma) has helped me put it aside when I want to get on with other things- it gets put in my diary as a separate item.

So......... delighted to tell you that I have in fact been able to get an invitation to be a guest on a sailing of the Reaper at the time of the Pittenweem Festival in August and looking forward to it immensely. See Reaper in the foto. Also possibility of a wee holiday in Norway ( a country and people we like very much) later in the month depending on how things go at next clinic.

PS

PS- apologies to those who are expecting me to get back to them. I will do but its been a heavy week.