Sunday, 27 July 2008

Brechin, Tour de France and clinics

(Firstly a Brechin City paragraph- prompted by the comment on my last post. Hi Alastair- good to hear from you- can't email you as I don't have an email address....?. But the blog has allowed me to make contact with other folks from Brechin High School- Ken ( Currie) and I have met up a few times; we've also met with Alex Garbut and I'm trying to meet up with Ken and George Easton( I think you may know him as well). I know you know Jon and heard from him that he knew you well.)

Couldn't make it to the Tour de France finale on the Champs Elysees in Paris but one of our friends was there and texted a photo of the finish- not quite the same thing but good nevertheless. Thanks for the foto Maureen!

My haematology clinic appointment has been brought forward so on Thursday we should know if I'm to carry on with the thalidomide etc treatment. You'll recall I've doubled up on the Thalidomide and it is actually tolerable but does make me very tired and takes my system down a bit. It is tolerable and to put it in context one of the folks reading this blog contacted me to tell me that when they doubled his thalidomide dose he knew it was time to have it reduced when he couldn't remember his name at the clinic reception desk!! But it has been manageable but the real test is of course what its doing to my paraprotein levels- for that reason I'm going in to get my bloods done tomorrow so we have the results for the clinic discussion on Thursday. If the paraprotein has gone up then can't see the point of carrying on. If down, then we might need to keep going. If its stuck at the same level- then that's a tricky one. We'll see. But quite keen to have a decision as the uncertainty means we can't make plans in other areas of our life.

Myeloma does eat into the old diary a bit and in the next two weeks I have clinic appointments at haematology, clinical oncology, diabetes, the dental hospital and referred back to the orthopaedic guys to have a look at the pin in my leg. Time consuming stuff!

But to make many of you jealous- our solar panels are working wonderfully and we're only occasionally putting on the heating just now for hot water! We also have another plumbing etc project in the planning but again it does show that whatever else the myeloma is doing it is still allowing me to take on wee projects though I might do them a bit slower than I used to.

Thursday, 17 July 2008

Hi Fred

I hear my failure to keep my blog up to date has made some folks wonder if all is OK!! Usual story- this is my first week of my cycle and the mixture of Thalidomide, melphalan and prednisolone takes its toll and energy levels a bit low. More importantly there is also the Tour de France on the telly and I've just seen Mark Cavendish take his third stage. The commentators say that three stages in one tour is a record for a British cyclist but we all know that as he is from the Isle of Man and a Manx man he is of course from the Celtic fringe as well.

Dental hospital tomorrow to check on the osteonecrosis in my jaw and then with the all clear we are going away for a week so probably no posts then as we are in wildest Scotland. This is my first week on the double thalidomide so we'll see what its like when I'm off the steroids. We've planned the drive to where we're staying to coincide with my first day without steroids- which is usually not bad. I usually sink for a couple of days after that but it will be a change to dip a bit in a different setting. And if I'm up to it- the Balquihidder Highland games are nearby. My wife thinks I make up all the names of these little Highland Games events- first we were at Drumtochty and now Balquihidder!

So we're all going on a summer holiday....... ( I hope)

Friday, 11 July 2008

Clinic (or Clinique for Tour de France addicts like me)

End of third cycle and at clinic today. Bit mixed and usual myeloma uncertainty. My paraprotein has gone up to 14. The doctor thinks its not clear yet whats happening and that it might still plateau. My experience has been that I respond well to treatment initially but then the paraprotein swings and rises happily- and that's what I think is happening. I don't like the thalidomide but have agreed that I'll try the 4th cycle and also that we double the thalidomide dose. How I react to the thalidomide will tell us whether I can complete the cycle or not and if the paraprotein goes up or down at the end of the cycle we'll know whether its worth it or not. I can come off the cycle at any time if I react as badly as I did the first time. Be interesting to see what happens because it appears I'm also a bit neutropenic though not desperately so. So double dose of thalidomide from tonight.

But consoled by the fact I can watch the Tour de France most days. If the decision had been made not to go on with cycle 4 we thought about going to Paris to for the 27th July and see the end of the Tour- as we did some years ago with our kids ( when they really were kids) and saw Steven Roche( I think) the Irishman, come in as winner. This year our hope would have been to see another Celtic rim win with David Millar the Scot coming in who was 5th overall yesterday but fell back a bit today. But I suspect he won't win it and we won't be there anyway!

Having myeloma is a wee bit like the Tour de France- you win some stages and lose others and never quite know how things are going to pan out. Also much more difficult race without good friends and family supporting you a long. We should have the equivalent of the yellow jersey- the Myeloma Jaune instead of the Maillot Jaune! Phew- I'm getting surreal and maudlin again. But last year, my GP did say that he thought I was taking more drugs than the Tour de France riders- that's quite a statement.

Wednesday, 9 July 2008

Cycle, cycle and the length of string

Just coming to the end of my 3rd cycle and went in to WGH to have bloods done in advance of my going to clinic on Thursday(tomorrow) so that we know what is happening to my paraprotein level and so can make an informed decision about whether to continue or not on the PMT treatment. I have mixed feelings about but as it did appear to be doing a bit of good I'll reserve judgment. Great thing about my doctors at the WGH is that I'm part of the decisionmaking process as I would want to be and though I'm sure I pester them now and again with my questions it does mean I'm involved fully in my treatment. I prefer that to be the case and as I get further doiwn the treatment route the time may come when I/we have to decide that the extra treatment isn't worth it- balancing treatment against quality of life.

I also though took the chance to discuss a number of niggles I'm having just now and in short- I have an issue with one eye just now- can't focus properly and my eyelid seems to droop on occasion- noticeable to Elspeth. A number of possibilities being explored. One is that it may be shingles in my eye( so back on the aciclovir!). Second is that it could be a rare type of myeloma- CNS myeloma( but very very rare) or that the lesions in my skull have developed and the changes are impacting on certain nerves. So- x rays taken. Also, my leg with the tibia pin/nail in it is swelling more than usual- maybe an infection and possibility of it having to come out if a serious infection being discussed- so, x rays! Also bit of a new sore spot in my right arm ( the one where my wrist broke) and so- more xrays! After all the x rays I'm sure I have now started to glow in the dark and should be safe in the dark winter nights as traffic will see me! But a pretty heavy day yesterday not helped by the fact it took 11 goes to get blood from me- as a true Scot I don't give anything away easily.

Also took the chance to ask my favourite "how long is a piece of string"? question. I.E.- given all my treatment and where I am just now and given that its a pleasant surprise that I'm still here when I might not have been after earlier warnings- now long might I be expected to live. The answer as usual for myeloma is very clear and very certain- we don't know! Could be 6 months, a year or more. This is pretty typical of myeloma- the uncertainty of it , how it affects different people and how long survival rates. I intend to resist all predictions of my demise as I've done so far and adopt my usual response to timescales with my sophisticated medical philosophy of - " Bugger that!".

To add to the concerns of my family and neighbours, I've also got permission from my clinical oncologist to ride a bike again ( within limits). So at the end of the 3rd cycle I hope to be back on my own cycle with all the implications that has for the rising blood pressure levels of friends, family and neighbours!