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.

Hate to say I told you so, but..............

At clinic today ( haematology ) and decision made that I will withdraw from the lenalidomide trial. My paraprotein is at 11 as you know which is a rise of 6 steps in the past 5 weeks or so. Also, my history is one of never quite making it to a complete 5th cycle, so as predicted earlier in the blog- no 5th cycle for me! And this despite the dramatic improvement the lenalidomide made in the first cycle. Great thing about WGH is that I'm part of the decision making process and my own view that I don't want to carry on with treatment unnecessarily is an element in it. Next question is obviously- so what do we do next? Its clear that we are running out of options though Huw my consultant has some tricks still up his sleeves. The nice thing about my treatment at the WGH is how well I've come to know some of the nurses and how concerned they are about what's happening to me- having had about 6 chemotherapy regimes and a stem cell transplant at the WGH it would be odd if I didn't see them as friends more than nurses. And since at least one of them is now able to tell me the Brechin City score ( I hope you are in training for the new season Liz)on a Monday morning- what more can you ask for!

But being realistic I know that we should be treating this summer as my last though we'll get a better idea of timescales when we see what rate the myeloma progresses at. The plan is to monitor me over the next month or two with no treatment and see what happens to the paraprotein levels and then take a decision about when and how to intervene. I've enough to keep me bust in any case as in the next few weeks I have to go to the Maxillo facial guys because of my jaw, go to the diabetic clinic ( my recent retinopathy test was clear), go to the Orthopaedic clinic to monitor my bone issues/pins, plates etc, go to radiology clinic to monitor effect of radiotherapy on one or two lesions, go to dental clinic at the WGH etc. As relief from all this, my sons are taking me to the Barcelona game in Edinburgh and Elspeth and I are planning to go away (with an ill dog!)for a break.

( One thing to say here is that- and this might seem odd if you don't know how varied myeloma can reveal itself- is that I consider myself very lucky medically in that though the myeloma has made me ill some times and I've broken the occasional bone, had surgery, become diabetic etc etc it hasn't actually stopped me completely from doing things. Nor have I had the pain levels some others have had. And as many cancer patients will say- the myeloma has given me the opportunity to view the world with more appreciation and get off the economic treadmill and also be closer to Elspeth and our kids. So - all in all- really quite lucky.) Why do we need to be ill to get into that state of appreciation of our lives ( I'd better stop this is getting a bit serious).

So I'll need to digest all this and have a think. Might also need to think about whether to keep the blog going or not. But the good news is that the solar panel seems to be working OK- but if we could get a wee bit more sun..................

Three months on- the wife's tale part 2.

Yesterday's news that Stewart's paraprotein is headed in the wrong direction was not only disappointing but, to be honest, a bit of a shock. He has been so well over this last cycle! Indeed, aside from fatigue and a few blips, he has ridden out the three cycles he has had since I last gave a view for the sidelines pretty well and achieved a great deal too. Since selling the hall flooring while I was out (see 2 April entry), he has rewired and redecorated said hall, put in piping for and installed a bigger solar panel, been to France, advanced plans for the research centre on rural childhood, got a piece on myeloma in the national paper to do his bit for myeloma awareness week and had a couple of weekends away. Seeing him on the roof yesterday morning totally engrossed in fitting the first tube on the solar panel frame was a special moment for me. I didn't know the latest paraprotein result then but did think that I have Revlimid ( and Huw and the team at WGH)to thank for that moment (not to mention cheap green hot water in the future). And then there is the wormery Stewart got me ..... not perhaps the most romantic present but he got so much pleasure from anticipating its arrival and my reaction. So, whatever happens on the next leg of the journey, we will look back on some pretty good and fulfilling times on this stretch of the road.

Chinese toothpaste and that well known medical term- " Oh Bugger"

The good news first- solar panel system now up and running and has heated water very effectively in its first afternoon. Hope this keeps going. Always an immense sense of satisfaction building some yourself and then it actually works ! ( not always the case in my experience). But this time- built a low cost system( I reckon about £1200 in total) which does in fact heat water at no cost and with low installation cost payback time should be much reduced- particularly if gas goes up again. So a good one. The reference to Chinese toothpaste is that the solar panel kit is made in China but distributed through a UK company. To connect the heat pipes to the main collector the kit contains a tube ( like a toothpaste tube) with white thermal silicone ( to make for good connections) with the instructions in Chinese. In the trade this is referred to in a short hand way as Chinese toothpaste.

The bad news is that I've just heard today my paraprotein has jumped up 4 notches and stands now at 11. So in the past 5 or 6 weeks its actually gone up from 5 to 11- not a good result and as I see Huw my consultant tomorrow we'll need to look at what all this means. And if my neutrophils haven't gone up then I suspect at the very least I won't start my 5th cycle tomorrow( Remember- I did tell you I've never completed a 5th cycle in any of my various treatments!). Many thanks to Don ( who I don't know but thanks for the nice email)who reminded us that studies are now showing that low dose dexamethasone with Revlimid is as effective if not more so in some cases. Unfortunately I had already been put on low dose dexamethasone but my paraprotein seems not to have read the recent studies and so isn't following the script. I'm also feeling my ribs pretty sore and don't know yet if this is to do with climbing ladders or to do with my myeloma ( I broke ribs coughing in the early stages of my condition). I'll follow up when at clinic tomorrow. But, as the medics say in highly technical language- Oh bugger!!

White counts/neutrophils etc

Just had bloods done at hospital and it appears I'm neutropenic by quite a bit- my neutrophils are .7 I think normal starts at about about 2 and I often - even at my best- run at about 1.2) I usually have low white counts etc but .7 for neutrophils is low even by my standards. The protocols of the study suggest that if neutropenic then the dose of lenalidomide has to be reduced. Problem with that is that once reduced it can't be increased again. I have until Thursday for an improvement in the neutrophil level so that I can continue as planned in the trial. But remember my warning right at the outset of this trial- I've never completed 5 cycles of any drug/chemotherapy I've been on. Beginning to suspect that pattern may well happen on the lenalidomide trial as well!

I also had a paraprotein done this morning so we'll see in a couple of days whether the unfortunate trend is still on the way up.

Scaffies, zulus and fifies!

To those of you from Brechin who have reconnected, no- "Scaffies" don't refer to the rubbish collectors! They are all types of traditional boat though as far as I could make out there was only one Zulu at the Portsoy Traditional Boat Festival.

A great event- boats, music and traditional crafts all on display and all for an entrance fee of a fiver ( though I think my chemotherapy journey accounts for the fact that the girl selling the tickets insisted I was an OAP concession. Ach well- maybe I'm older than I think). There are two boats of note in the photo and both are "Fifies". The green one in the front of the harbour wall is the Swan which sailed to Portsoy from Shetland. The sails of the other behind the Swan is the Reaper- a 70 foot fifie which is also part of the Scottish Fisheries Museum at Anstruther in Fife. ( By sheer coincidence I've just been watching Coast and there was Reaper sailing up the Fife coast!) You can judge how large the sails are by comparing them with the folk in the photo. Don't miss the festival next year if you are "in to" traditional boats.

But as well as the enjoyment of seeing the boats, it was also reassuring that I was able to go there at all and to do so on my own. Yes, Elspeth let me out to play on my own though the cost was regular texts home to let her know I was OK! But this is my drug free week( apart from my warfarin and diabetes, so was feeling quite well though it was a bit tiring. But given that on Thursday I drove to Perth, had four meetings and then drove another 150 or so miles to Portsoy all in the one day then that was pretty good by my standards. For those others on lenalidomide/revlimid I hope its reassuring that I'm still able to do things like this. I had also planned to go to a vintage tractor rally ( do you get the impression I'm maybe born into the wrong time?)near Portsoy on the Sunday but heavy rain meant that was cancelled.

For those of you who saw the article in the Scotsman last week- no I didn't say that all myeloma patients looked healthy and overweight. What I did say though was that some of us- a wee group at Edinburgh- tend to look healthy, we are a bit overweight( I'd like to get off the steroids) and have difficulty convincing some folks we are actually a little bit ill. Since my kids now know, I can tell you that I've been told that I can expect to have optimistically a year or 18 months left. So I'll keep the blog going as long as I can and as long as folks are interested- we've now had over 1600 unique visitors and I've had some nice comments from folk.

Right - off to dream about old boats and tractors whilst still waiting on the final bit of my solar panel system!