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.

Paraprotein slightly up again.

My paraprotein which was down to 10 is now at 11. We don't of course know if this is the result of a plateau or whether its going up again so we'll see at the next clinic. Thinking seems to be that we might try to up the thalidomide dose just in case I get some benefit from that. We'll see what the next paraprotein result is. I finished taking the melphalan, prednisolone, thalidomide mix this morning so we'll see what that does to my blood counts- at this stage the last two cycles I became neutropenic and also ended up in hospital both weekends- hope to avoid that tomorrow!

Meantime as usual, the myeloma trail is full of appointments- I'm having 5 consecutive sessions of radiotherapy on my shoulder which is proving troublesome again and also waiting on a Dental hospital appointment to explore further the osteonecrosis in my jaw. All the drugs I'm taking are playing havoc with my INR( the baseline for determining my warfarin dosage) so I'm currently getting my blood tested for that every two or three days. And since the steroids throw me into insulin dependent diabetes on a short term basis I've also two diabeteic clinics to attend. Phew. Time consuming this myeloma business! If anybody knows of a doctor offering body transplants........

But the main pleasure I'm getting just now is watching the gauge showing our solar collector heating the domestic hot water with no gas involved- I knew it was a good idea!

Paraprotein, Pipebands, Dougie McLean and Ray Mears

Paraprotein at end of cycle 2 was 11- so marginally up on the 10 of two weeks before. Need to see at the end of this the third cycle where it goes- its maybe reached its plateau- we'll see.

Was able to go to the Scottish Pipeband championships in Innerleithen on Saturday though it involved two sleeps in the car during it. But great to hear the really young bands coming through and made me get out my own pipes when I got home( I have electronic ones as the plates in my elbow won't let me risk the real thing). Bit of a shock to the system to hear 11 and 12 year olds playing tunes I'm still trying to play properly after about 20 years ! Plan is to try to go to the worlds championships in August this year if I can.

I was listening to a Dougie Mclean CD ( you will know I like his use of the Ferguson Tractor as a musical instrument in one of his songs!) and heard the Song of the Survivor. I'm also a Ray Mears fan and have been watching some of his programmes about survival and survivors. It set me thinking about a phase I'm going through just now- of almost being a survivor and going through survivor syndrome. All the indications were that last year was maybe going to be my last year and I was put in touch with Marie Curie etc, got early release of some pension policies because of my situation and had of course quietly alerted friends and families about what might be happening. But - as you'll gather from this post- I'm still here!! Great as it is is to still be around, there is a feeling of how did that happen- particularly when a number of my myeloma and other haematology colleagues didn't make it. I think there may also be myeloma fatigue for some of my friends as they've lived through all the possibilities with me and there has to be a limit to the amount of emotional hightedness they need to bear. What is a wee bit difficult for us myeloma patients is that we also tend to look pretty well a lot of the time and able to do things- except when we are on chemotherapy!- so it can be a wee bit difficult to let folks know- except those close to you- just how you are feeling.

Ach well, I'm beginning to ramble. I have to say I was disappointed in the last Ray Mears programme where he was on Walkabout in Australia- showed us some bush twigs etc that the Aborigines used to light fires- extolled its virtues as good tinder and caught light easily. He then took out a petrol lighter from his pocket and lit it with that!! Come on Ray, cheating a bit.

A long cycle! and Solar Panels.

Right, that's cycle 2 finished and it seemed like a really long cycle- longer than the one I did by bike from Brechin to the French Alps when I was 15. Decision is pretty much as expected- go on with cycle 3 as my bloods are really in pretty good shape( actually really quite good for me given the chemo etc) and despite the side effects of the thalidomide, evidence seems to be that its doing me some good with paraprotein hopefully still coming down. Though I was at clinic yesterday, the paraprotein result doesn't come through for 3 days so I won't know till Monday where I stand in that respect.

I'm not as on the ball as I should be- which I put down to the thalidomide( thalidomide is to blame for absolutely everything!) and I turned up at the WGH dentist on Wednesday at the wrong time and then also at the wrong time for the Haematology clinic- requiring one of the registrars to see me when she should have been having lunch. Its the thalidomide I say!
In terms of my jaw, a wee referral to the dental hospital to see if anything needs done for the wee bit of osteonecrosis I have but meantime put on antibiotics. What great service we get- and its all joined up( except when I get the appointment time wrong).

When I was waiting in Ward 1 at WGH for my prescription for my chemo drugs( I take all my chemo in tablet form and do it at home myself) I had a long chat with one of the doctors about really serious issues- yup, we were discussing the merits of solar water heating and photovoltaic cells! Those of you who read my earlier blog will know I built solar panels last year to heat our domestic water- best thing we ever did and our boiler kicks in only rarely now. Every time we hear of gas prices going up we go into the garden, look at the solar collector on the roof and have a wee smile.

End of cycle 2 and myeloma- how come?

Reaching the end of cycle 2 and see my consultant on Thursday. Overall, its been pretty hard work and its left me pretty low and tired- I've been sleeping for Scotland. What I don't like in particular is the way the thalidomide saps me of energy and motivation to do things- its not me!. An email from CS however confirms he went through the same kind of process and he also had to have his dosage of thalidomide reduced to the beginning level of 50 mgs so that he could cope with it. He also reassured me that only two or three days after finishing the treatment and coming off the thalidomide he was back to his usual self. I supoose the bottom line is that if there is some gain being made in terms of the paraprotein level being reduced then its worth it in the long run. We'll see on Thursday. Meantime I've also to see the WGH dentist again as I may have a bit of osteonecrosis to deal with in my jaw. Find out about that on Wednesday.

I also raised some issues about why I got myeloma and one of the factors suggested was pesticide. Don from the US also said that he had had contact with malathion ( as I did working on a fruit farm) though in much smaller quantities than me. CS in his email also pointed to an article which suggested there might be a link with the poliomyelitis vaccination- as he said, he saw it in the Sunday Post so it must be true!. One thing I think we have agreement on is a bit of surprise that no database on our background/life experiences is being kept and that this is maybe a shortcoming in the attempt to locate the causes of myeloma.

Myeloma- how come?

Firstly, thanks to Don in the States for the supportive comments etc.

Second, as a quick update- now in the last week of cycle two and drifting along- I really don't like the thalidomide because as well as the physical side it also seems to take away energy and motivation to do things- at least in me. I'm also having my jaw/gum looked at again as there does seem to be a bit of change there- so off for x ray etc.

One of the questions I haven't a good answer to is why I got myeloma. I don't mean this in the sense of why me? I've never asked the question in that way and have never asked what I've done to deserve this- I simply assume we are all likely to fall ill in some way and in my case its the myeloma. The question for me is more about what factors led to me getting multiple myeloma. The medical literature isn't really much help as there is no definitive statement as to what factors predispose someone to myeloma- in short, we don't really know though it does appear that there is an increase in the number of folks with myeloma.

It might also not be helpful to look for the factors leading to myeloma around diagnosis time. My myeloma appeared in August/September 2003 but I'd been told as early as 1994 - as a result of a biopsy for something else- that I had a paraprotein spike in my blood and might get myeloma further down the line. I've two broad lines of thought regarding me and myeloma. One is that I grew up in extreme poverty in a house that was in an appalling condition by anyone's standards( beginning to sound like the Monty Python sketch- we were so poor that......) and where my brother and sister contracted TB- in the case of my sister involving many years of treatment. (As a quick aside I can also remember being collected by one of the local charities to take me to a pantomime in Aberdeen and being on a bus with all these other children and thinking " These must be the poor children"- never of course putting myself in that category!). So conditions were really quite bad and we were open to all kinds of things. One of the consequences of the TB in the house is that from my earliest days I was monitored for TB and had 3 monthly x rays all through primary school. A number of us with myeloma do seem to have had exposure to lots of x rays when we were younger. Mmmmm.

What the literature also suggests is that there may be a link to pesticides and in my case there could be a very strong link. You all know by now of my love affair with the Ferguson tractor and that I worked on farms all through my school and student days. When I was driving age one of the jobs I had was spraying the raspberry plants with a big tank of pesticide on the back of the tractor, Raspberry bushes are of course planted in rows and so the tractor being a small one for access reasons is pretty much enclosed in between the rows and any spraying means the driver is exposed to the chemicals. In my case, I was spraying Malathion- a pretty aggressive pesticide- and doing so for days and weeks on end and with absolutely no protection- sometimes filling up the spray tank from cans and then having my sandwiches sitting amongst all the cans/fumes etc. These are practices that no farm would get away with at all now. So I wonder about that as well.

The fact is though that there is no definitive answer though the fact that numbers of myeloma patients are increasing does suggest a common factor of some kind- life style? treatment of food by things like pesticides etc?