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.

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)

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.

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!

Wee break, pipes and games

Just back from our wee break in Aberdeenshire in a cottage on a wee caravan site in Aberdeenshire. Lovely site by the sea, small site and with a whole host of animals around- ducks, goats, sheep, horse, hens etc all on the site and with lots of wildlife flying around as well, This included a group of 3 or 4 herons sitting sun bathing on the hill opposite. If interested have a look at www.miltonhaven.co.uk The location also meant we could visit the east coast fishing villages and harbours at Gourdon, Johnshaven and Catterline( in Joan Eardley's footsteps).

Weather was great at the weekend and we did indeed make it to the Drumtochty games to see the traditional sports being played as they should be at a highland games day ( I've become a member of the grumpy old man club and don't like some of the "plastic" introductions at some games). Bit of a surprise when we met some of my family from the area and then to discover that three of them were playing in the piping competition. Day was complete when we left and on going through the exit gate saw a pretty characterful busker wearing his amplifier as a sporran on top of a well worn kilt.

The old body stood up pretty well though the tiredness from the thalidomide did creep in a bit and I knew I'd have to take it easy the next day but not a major problem- in fact we went to visit friends the Kinnears in nearby Edzell- Ian is a smallpipe maker - he made mine- and you can see examples of what I think is wonderful craftmanship at www.scottishsmallpipes.com
( I'd better stop- this post is becoming more like an advert for Angus and Aberdeenshire businesses than a myeloma blog!)

So in short a good break despite the thalidomide etc. and whatever else is hapopening the thalidomide hasn't stopped doing other things this cycle in the way it did in the last two cycles. In fact, the suggestion is that if I have another cycle the dose might be doubled- we'll see. If you see anyone walking down the street asleep- it will be me on double dose thalidomide!

Ach Bugger and the Island of Harris

Ach Bugger- one of our good friends has been diagnosed with cancer. Its interesting how someone else having cancer- especially a good friend seems a bigger deal than your own. It may be in part because the myeloma journey can be a long one and there is time to adjust to it and accommodate it and you forget the initial phase of diagnosis and immediate treatment. As I was saying before in earlier posts- I'm going through a survivor phase and Elspeth and I are aware that some of our friends may be suffering from myeloma fatigue, IE that I'm still here despite various points where I thought I might not be and friends might have built themselves up for all eventualities at different points in the journey. But when a good friend is diagnosed it still is quite a shock.

On a cheerier note- one of our other friends is going off to the island of Harris ( complete with fiddle and wife- in that order I think). I pointed out to him that I'd seen reference in one of the newspapers to the fact a committee on Harris had been stood down with the sub heading " Last Quango in Harris".

Nae Hospital! and Wedding Dowries!!

Right- that's the end of week one of cycle 3 and unlike the other two cycles I haven't ended up in hospital and feel better than I did the last two times. Hope that's reflected in a lower paraproetin as well.

Since I feel like this we're going to try to have 2 or 3 days away and go to some Highland games at the week end- I need my fix of the countryside, pipe music and general things Scottish. Might make it to the Drumtochty Highland Games - we'll see. We'll stay at a wee coastal village called St Cyrus- the east coast from Montrose north has some lovely wee fishing villages and we'll visit some of them. St Cyrus has another claim to fame- it has a dowry system for new brides. As part of the Old welfare system under the Poor Law a number of dowries were made available outside usual principles. So at St Cyrus dowries were and still are available for the tallest bride, the shortest bride, the poorest bride etc- still apparently on the go and a nice wee custom hearking back to someone with a sense of humour.