Wednesday, 27 June 2007

Velcade and Giftaid

To answer Bobin(?)'s question- I had 4 cycles of Velcade and although it brought my paraprotein down it did so quite slowly. Also it was the effect of the steroids when I was on the Velcade which threw me into Diabetes.

Many thanks to Anonymous who sent £200 (almost £250 when gift aided ) to my Justgiving site ). Would CM like to email me!

Tuesday, 26 June 2007

What's happening here? Boats and Tractors

Not sure what's happening here- still taking the lenalidomide( finishes in a couple of days) but feel very well( usual tiredness) and no rash appearred. By this stage the last two cycles I was covered in a pretty serious rash. Its odd the things that come into your head- maybe its just talcum powder in the lenalidomide capsules! Maybe they've put in too weak a mixture. Whatever the reason, this seems a different experience from earlier cycles. The fact that my steroid dose was reduced may also be something to do with it.

I also now have an idea of my survival timescale- which I'll keep to myself just now. Its not really any different from what we were expecting- but it certainly concentrates the mind. The fact is- without the medics and the availability of recent drugs I wouldn't be here so anything else really is a great bonus.

I think you know I like tractors ( see earlier post about Dougie McLean's song Strathmore starting with the sound of a Ferguson tractor). Elspeth bought me a book on classic tractors so if you want to know about the 1900 Drutchke, the "Canadian" or about cable pull systems I'm your man. Great reading though. I've also been reading about Harry Ferguson- the man who built ( surprisingly) the Ferguson tractor and also the three way linkage system which revolutionised the attachment of implements. Part of his plan was not just to make money but also to provide third world countries with a cheap effective tractor to help address poverty through more effective farming.

As well as old tractors I also like old boats (maybe the liking of old things reflects advancing age!) and am treating myself to a weekend at the Scottish Traditional Boat Festival at Portsoy on the north coast of Aberdeenshire. Looks like a great weekend-

Can't finish my solar panels as I'm still waiting on a bit from the supplier. Mmmmm- missing all that solar energy.

Saturday, 23 June 2007

Mid cycle review

From the 4th cycle on there is in fact no mid cycle review in the trial. That is, no blood checks etc- the assumption being I suppose that by this stage any serious issues would have been thrown up. So this mid cycle review s just me!

Oddly, though I've had the usual slump after coming off steroids it hasn't been as severe as it was on the first few cycles. I'm tired but gently so- not the dramatic exhaustion I was hit with previously. As I've also said earlier, the rash hasn't appeared and it had done so by this time the last two cycles. So in general I feel better than I did on the earlier cycles and not so much affected by the lenalidomide as previously. The main issue for me is of course what is happening to my paraprotein as it took an unfortunate up turn last time round. I'll need to wait till next clinic to see what's happening to it now. If it goes up again there will probably be an issue about whether I should/ or whether indeed its worthwhile me staying on the trial. If the lenalidomide has achieved all it can, then is there any point in carrying on with it. We'll see.

Friday, 22 June 2007


By this time in my last two cycles a pretty severe rash had appearred and we'd put it down to the Lenalidomide. But nothing has appearred yet in this cycle though I'm half way through again. Be interesting to see if anything does appear.

Wednesday, 20 June 2007

Did you know.......?

For other myeloma folks. Did you know-

that you might be eligible for care and mobility allowances? ( I get them)
that because of above you might be eligible for a motability car? Even if you can't drive, a mobility car could be acquired for your carer. (Because of my left side plates/pins problem I have one with automatic gearing etc?)
that you might be eiligible for a blue badge- again even for your driver/carer
that you might be eligible for a bus pass? I am and have one
that you might be eligible for a rail pass. I am and have one
that you can maybe drawn down a private pension as a lump sum now rather than have to wait until you're no longer here. Spend it now I say and bugger the kids!! I'm trying to do this.

And while we are on the topic, we've decided that Elspeth my wife should have Power of Attorney over me should something happens that means I can't make decisions myself. The joke around our friends and family is that the Power of Attiorney means Elspeth can make decisions about all aspects of my life-just as she's been doing for years!! BUt seriously I don't want my survivors to be in a position of dealing with the medics etc not knowing my wishes over what kind of treatment I'm prepared to tolerate etc

Just a thought.

Atoms, panels, clinics and cycles

Important things first. As you know- I enjoy atoms of delight- events which have an immediate and pleasurable impact without the need for words or explanation. On Sunday I had not so much an atom of delight as a near nuclear power station. Watched Cardiff singer of the year and felt I'd been involved in something truly special when I hear the voice of the 23 year old singer from China. If you have a replay facility on your telly- have a listen! What a remarkable voice.

Solar panel system almost completed now but waiting on a bit from my suppliers so in about a week or so I should ( fingers crossed) have a solar panel system up and running for just over a £1000. Not bad- all we need now is the sun! I also got myself into a surreal position yesterday ( I was feeling a bit fed up with various bits of news) where I wondered if on the days I get very tired ( like this week) I could actually plug myself into a solar powered immune refreshing system just to keep me going. I'll have a word with Huw my consultant.

I collect clinics!! One feature of myeloma is how many bits of your body it can attack/involve in so many different ways. The latest is a referral ( Hi Helen) to a maxillo facial consultant as there is more of a suggestion now that I might indeed have osteonecrosis in my jaw though still not 100% sure yet- hence the referral to my 7th clinic. If anybody else collects clinics and if you have any doubles and want to swap one of them -just let me know.

Will I make my 5th cycle! As you know I've never completed a 5th cycle of treatment and as my paraprotein had gone up at end of the last cycle I wonder if we'll make it this time. Maureen, Huw and all the others involved are adamant though that they'll do what they can just to let me day I've had 5 cycles of at least one form of treatment. You should also know I've actually sold my cycle!- yup, cycling days are over.

Monday, 18 June 2007

Remarkable dance event- St Kilda+ Xmas

For those of you with an interest in Highlands and Islands coupled with a wee bit interest in dance, there is a remarkable dance event on 22/23rd June featuring French dancers dancing on the cliffs of St Kilda( I kid you not) and with production linkages in 5 countries. I think the event in Scotland is to be largely shown at venues in Northwest but there is apparently also to be an online webcast- times to be announced I think.
See info at where there is info about the event/film trailers and also an archive about St Kilda and the evacuation. The cliff dancers reflect the St Kildans in the archive film rope hanging while collecting the famous eggs.

It felt like Xmas eve last night- excited about the roofer coming today to put up the structure to hold my solar panels! Catch up on sleep tonight!

Saturday, 16 June 2007

Something in the water?

Couple of days ago we were told our dog has a malignant tumour in his throat- must be something in the water at our house. He's been coughing a lot and also his bark is getting deeper. The diagnosis really just confirmed what my wife and I suspected. Like many spaniels he's had a fair share of ill health and we were in fact quite surprised he made it to 14 given that he's had pancreatitis a couple of times. So holidays next few weeks etc will mean not going too far away and taking him with us as we need to track what his progress is.

I'm going through my usual bout of post steroid dip- very tired and now got the usual mucositis in my mouth and throat- but it will pass. Going to bed about 9 pm and sleeping through till 7- pretty unusual for me. Unfortunately- you know I'm being monitored for osteonecrosis( bone issues) in the jaw- I now have bone coming through my gum. I see the WGH dentist on Tuesday so we'll get an update on what's happening in that neck of the woods.

Main disappointment is my roofer couldn't come on Friday so I can't complete the pipe run on my solar panels! But he'll be here on Monday ( fingers crossed) so hope to have it up and working by the summer solstice.

Monday, 11 June 2007

Bit of a bummer

Heard today that my paraprotein has reversed and has in fact gone up again- back up to 7. I had an extra week off treatment when we went to France and seems to show the usual issue I have- I can get the paraprotein level down but without treatment it doesn't stay low for long. Mmmm! I need to reach the 5th cycle!

Sunday, 10 June 2007

Dexy's mid night runners

(Message for Fred- no news on the dog yet- test results due back this week- but fair to say whatever it is he is struggling a bit)

Dexy's mid night runners( the dexamethasone/steroids) up to their old tricks after my first lot ( 20 tablets at 2 mgs each so still a hefty dose). My blood sugars shot away up and all the classic signs of diabetes have reappeared- despite my upping my insulin. Also awake until about 3 and then broken sleep until about 7.30 but better than some nights when I can't sleep. Fortunately I am down to one pulse ( a 4 day period on the dex ) and in any case the study protocol states that cycle 5 and 6 goes down to one pulse so I'll shortly be back in line with the study protocol. Will get a new para[protein result tomorrow so should know how its doing. The team are all optimistic that I'll manage my 5th cycle ( I think I've told you I've never made the complete 5th cycle in any of my many treatments) and the are all working their medical socks off to ensure that happens. Fact is- I wouldn't be here without their efforts and as you know I was predicted by one medic that I wouldn't be here on my birthday which was 5 weeks ago). So despite the effects of the steroids I'm happy to bear that small cost for being here longer.

One of the difficult things for us myeloma patients is that we often look very well though those who have seen us through the treatment also know how ill we can look. But it must be difficult to get over to folks that we have an incurable cancer when we look so well and are still managing work of a sort. One of the good things to come out of the trial ( and I hope you see my blog reflects it) is that quality of life is as important as staying alive. As I've said before if the lenalidomide kept me alive but wouldn't let me leave the house and pinned me to the fireside with my slippers and pipe( metaphorically speaking!) I wouldn't want that. I would rather have less time but be able to use it better. So all of what might seem to you to be personal information is me simply letting you and the Celgene folks that make the drug know that I'm still able and happy to be climbing ladders( despite the plates and pins I now have) installing solar panels, building gates, installing new water tanks, doing work with UHI; going to the South of France by plane and train, and generally being around with my family. All this is in the context of knowing - as always the case with myeloma- its all so unpredictable and uncertain as to how I'll be in the next week or the next few months. For example, despite feeling quite well just now I have no problem with and really quite welcome my outreach contact with the Marie Curie Hospice knowing that the hospice is not needed just now but might be further down the line- whenever that is.

I was also asked yesterday if I'd become a more spiritual person- I think that will keep for another blog- have a think yourself! I have to let you know that we went to a caravan for a long weekend at Balir Atholl caravan park a wee while ago- the caravan number was "42" which we thought quite appropriate as it is of course the answer the computer gave in Hitch Hikers guide to the galaxy when asked what the meaning of life was. So now I know what its all about!

Saturday, 9 June 2007

Driving and Dex

Drove over 300 miles today and to make it a bit easier delayed taking the dexamethasone till after the jour ney as my blood sugars would undoubtedly have gone up ) as they have to today!). Having the motability car with automatic gearing made it so much easier on my left side where my plate in my elbow and pin in my leg are. So a good journey despite the serious accident on the bridge which meant it took over 5 hours.

Thursday, 7 June 2007

4th Cycle and no cycle

Now starting the 4th cycle of the lenalidomide trial so the usual round of steroid stuff the next few days. After having had no drugs at all over the past two weeks I've been feeling extremely well and getting stuck into a number of things. My big aim is to make it to the 5th cycle and complete it- something I've never done before and that's my next aim.

I've also decided its maybe time to start thinking about not risking cycling too much. The pin in my leg has certainly given me some things to think about and the overnighter in hospital on Sunday night for a possible clot ( which it wasn't) has made it clear that I may be putting myself under too much strain with cycling or even walking too much( we did a lot on holiday). So the bike is being given up for now.

To complete the family medical history- our dog is in having exploratory tests at the vets with a bit of a problem. He is after all a 14 years old spaniel but looks and acts about 4 years old. I might slip him some dexamethasone to see if that can gee him up.

Solar panels this weekend.

WE've now had 1076 unique visits to this blog from about 30 countries around the world.

Monday, 4 June 2007

Hiccup and press release

Minor hiccup last night ( well- as it turned out to be). Ended up in hospital with possibility of a DVT but in the end probably turned out to be too much walking going for my leg which has the pin in it. So on the scale of things not a major issue and always best for us to err on the side of caution.

I also promised sometime ago to let you know about something else I was working on and which didn't involve climbing ladders and installing solar panels etc! Today a press release went out announcing the establishment of a new Centre at the University of the Highlands and Islands Millenium Institute. I've been working on this some time with a colleague there and also have an honorary position there as well. We have now established a UHI Centre on Rural Childhood so again I point out that the myeloma and my various treatments including the Lenalidomide haven't brought other aspects of my life to a halt. Unfortunately my timing was impeccable as I did an interview on mobile phone when I was in hospital- not the best of contexts! Release went generally as the following extract ( I'll spare you the picture!)

UHI to launch research centre for rural childhood

UHI Millennium Institute is to launch a new research centre later this year which is expected to make a major contribution to the lives of children and young people in rural areas.

The UHI Centre for Rural Childhood, to be based at Perth College UHI, will influence the development of policy and practice on all aspects of life for children born into or brought up in the country. Many current issues will determine the main areas of interest, including health, education, crime, drugs, and the experiences of immigrant children now moving to the more rural parts of Scotland.

Professor Stewart Asquith, an honorary professor with UHI, will be the centre’s acting director. He is bringing the project to fruition with Dr Sheila Lodge, the UHI dean of arts, humanities and social sciences. Professor Asquith says it will establish UHI as a major site of local, national and international significance in the field of rural childhood.

He believes that much of the focus to date on children’s issues has largely been on children with an urban upbringing. “The UHI centre will play a major role in addressing that imbalance by emphasising the very different experiences of rural children and the implications this has for their growth and development and for effective service provision,” he explained.

“This will be achieved through research, consultancy, teaching and training, and the work of the centre will be of major interest to policymakers, practitioners and those generally charged with the responsibility of caring for children in a rural context.”

Professor Asquith, who was one of the first external examiners for the BA (hons) child and youth studies programme at UHI, said: “I am delighted the centre is coming to fruition and can think of no better place for it to be located than at UHI. I firmly believe that better understanding of the life experiences of children in our rural and remote communities will mean that we can better improve the nature of those experiences for many children.”

Formerly the head of social policy and social work at the University of Glasgow, most of Professor Asquith’s research and consultancy work has involved monitoring the extent to which the rights of children have been implemented in reference to the UN Convention on the Rights of the Child.

His work has focused on two main areas, children and the law, and combating the sexual exploitation and trafficking of children, and has taken him to most countries in central and Eastern Europe as well as Africa and the Caribbean. Much of his work has been for UNICEF, other UN agencies and for the Council of Europe.

etc etc

Sunday, 3 June 2007

We're back! "Auld claes and porridge"

Back from the South of France and we had the pleasure of a much better TGV so its gone up again in my estimation. Joutnery from Paris Charles de Gaulle to Montpellier took 4 hrs 50 minutes- a very fast journey. Journey from Montpellier to Paris CDG took just four hrs and 3 minutes- a very, very fast journey! Compare that with a delayed flight from Paris CDG to London and then from London to Edinburgh which took us in total about 6 hours! But a great holiday and well chosen week when I had no lenalidomide to take and none of the dreaded dexamethasone.

As we say here- back to " auld claes and porridge" as we settle into ordinary Edinburgh things though my solar panels will be attacked some time this week as I try to install them.