Birthday targets, Dem bones, Dutch golden circle and joined up care

Those of you at my birthday party in April will recall that my next target was to be still here when my fuel allowance came in. I'm proud to say that that target has been reached- I'm still here and my first ever fuel allowance arrived last week. Now need to decide on what my next target should be.
Dem bones are giving me a hard time just now- had to ask if Ward 1 at WGH could see me as I have a pretty sore chest and shoulder. I do know the signs and it wasn't unexpected that x rays showed that my right shoulder looked " pretty moth eaten" was the medical phrase used! So- more radiotherapy being lined up and harking back to Cameron's reference to the Black Knight( see his comment to a post below on the 29th November) I now have only one limb which hasn't had a plate or pin inserted or radiotherapy- my right leg. But it does mean that as my paraprotein goes up so too does my body reveal the effects of the myeloma which in my case has tended to be bone problems or susceptibility to infections. What it also means is that when I go to clinic on the 24th the decision about more treatment or not then will be influenced by not just what level the paraprotein is ( its at 34 and was 47 when I first fell ill)but also other factors such as my bone problems.

To bring this all back to my usual level the doctor at Ward 1 ( Brenda) told me she hadn't replied to a note about me going back on my bike because she was concerned enough about that but was even more worried that it might be a motor bike! I decided then to make her day to tell her that one of my friends and I were planning ( truly) to try to have a last big adventure for me by cycling round the Golden Circle in Holland( it involves going round the causeway built to enclose what the oldies amongst us will remember as the Zuider Zee. Brenda was OK after she'd been picked up off the floor and given a good helping of oxygen! Its clear I may not be able to do that but the planning of it in itself is good fun anyway.

I've also been to the doc's today to have my INR done( the measurement on which to base my warfarin dose). What struck me this time and last is that no matter which doctor I see they all know about what's happening and are very up to date. This reflects just how joined up my care is- as one doctor put it- if I sneeze at hospital, they have a letter the next day. But it does mean that the medic team at the hospital, Helen the WGH dentist, the team at my surgery, Barbara at Marie Curie and the district nurse( who for some reason I keep referring to as the midwife) all know what's happening whenever I see them. I have absolutely no reason to complain about any aspect of my care.

Some replies

Cameron
Thanks Cameron for your comment in the last post- I'm very happy to be compared with the Black Knight and like his determination to refuse to accept defeat- even with no legs and no arms- Great! For those of you who might find the video a bit "detailed " my medi tag site( I wear a medi tag with a website address on it should I need medical help. Its proved useful in one or two places as its more immediate than getting records sent) puts what Cameron is saying into context- www.asquithmedical.co.uk

You should also know I have another major test on Saturday- Brechin play Edinburgh City in the cup in Edinburgh so I can go along with my sons and other Brechin supporters- in fact all of them!

Davy( Brand) Good to see you on Monday- can you let me have an email address? Send to me at asquith48@blueyonder.co.uk

Clinic, Moultons and nurses leaving

Went to clinic on Thursday and not unexpectedly my paraprotein is up again- last month it went up 6. This month its has gone up 8 so I'm now at 34. Again the discussion was about whether I should have some form of treatment or not and again the decision is that as I still feel relatively well I'll wait another month. So next clinc will be the next decision point- and its xmas eve!! Sods law has set in as after speaking at the clinic about feeling relatively well, it now appears I have one of my rib problems again- we'll see if it clears up before I seek further help. But we've also now met with the District nurse ( who for some reason I kept referring to as the midwife!) and spoken about how to handle various things down the line.

But I'm still working away and working on the bathroom renovation and more importantly( though Elspeth might not agree) and well through the restoration of my 40 year old Moulton bicycle which I picked up for £31!. Amazing bikes and one of the first bikes to have dual suspension ( Alex Moulton worked on the suspension for the minis. Hoping to finish its restoration in the next week- resprayed, new bottom bracket, new suspension pivot etc etc. All good fun. Quite interesting that now that I'm more sore because of the myeloma and might have a rib issue again, I now feel the need to finish things I take on more quickly- just in case I suddenly reach the point where I can't!.

One of the nurses who saw me through the velcade and revlimid trials has left haematology at WGH and it has made me realise just how much nursing staff and others involved with my care have become friends after attending the same ward for 5 years. I can't imagine not becoming friends with some of them because 5 years is a long time. Interesting to know how nurses feel about this aspect of the nursing relationship ( I know some nurses on a course are reading this blog as part of it).
Right, back to spraying the bike.

Meditative problems

Had a sleepless night a couple of nights back and listened to the radio. Heard a wonderful line I thought you might like to hear. Two monks were having a discuission about what to in the face of an impending disaster in the monastery. They belonged to a meditative/contemplative order. In frustration one says to the other- " Don't just do something! Sit there!"
Well I thought it was funny.

Treatment, Ready Brek, Bikes, mini suspensions etc

In at the Western yesterday getting my bloods checked in advance of seeing Huw my consultant on Thursday. Critical issue is of course how far/whether my paraprotein ( the nasty stuff) has jumped again. It had jumped the last time but again, I felt well and didn't want to go back on treatment just yet. Issue this week will be the same-if the paraprotein has gone up will I go on treatment yet. Inclination is to try to get to Xmas with no treatment if I can.

I made a list in the last post( no its not as final as it sounds!!)of things I've been able to do. What I also have to remind myself of is the long list of things medical that the myeloma has forced on me in 5 years- 6 different regimes/forms of chemo and other therapies, a stem cell transplant, pulmonary embolism, 2 clots, slight osteocronesis of the jaw, loads of radiotherapy( some of you may be of an age to recall the advert for Ready Brek which involved children glowing as they walked to school- I'm convinced that after as much radiotherapy as I've had I also emit a light glow- saves on power and my own form of alternative energy!). But you can see the list of things at www.asquithmedical.co.uk if of interest (which is also written on my meditag).

However, I have too much to do and can't go treatment- I've bought yet another old bike- for £31. Its an old Moulton with back pedal brakes and back pedal gears( which I didn't know existed). Interesting man Alex Moulton- he designed the suspension for the mini with Issigonis in the 60s and transferred his know how to the first full suspension bike. Almost as interesting as Harry Ferguson who designed the Fergie tractor- steady on Stewart, nobody's as interesting as Harry Ferguson. I'll post a foto of the Moulton as is just now and hope to post a foto later to let you see the change( I hope).

Its been a while, knee pads and Screw Fix Direct

Two things happened last week to make me think how fortunate I've been in staying around longer than anticipated ( quite apart from the fact Brechin City could not afford to lose such a high percentage of their support!). One was that I went in for a routine INR to set my warfarin dose and in speaking with the doctor he reminded me that last year one of the other doctors had in fact ( at my request and with evidence from Huw my consultant) written to a pension fund I'm in asking for my pension to be released as a lump sum - this is permissible for some funds when the pensioner has little prospect of surviving very long. It was about January/February 2007 when that letter was written and I'm still here!

The other was that we met with my Marie Curie nurse last week and again spoke about the fact that it had been suggested last year that I speak with a Marie Curie nurse to make arrangements for where and how I wanted to be looked after when I was ailing a bit. And here we are almost 1 year and 10 months later speaking about the same issues again! Really quite remarkable how fortunate I've been in being able to carry on doing things despite the treatment and how my pain levels have been manageable. At the risk of being a bit dark it was also almost surreal speaking about how to handle what might happen when my time comes when I actually still feel quite well( though creaking a bit with the old bones). I'm still able to do things though I take a bit longer doing them than I used to- maybe not a bad thing!!

My wife and I made a tally of the things I've done since we were warned I might not be around so long- they include

• Building my great solar panel and fitting the whole system myself
• Redecorating our wee office/study
• Bought, sold( intentionally at no profit I may add!) and repaired a 30 year old campervan
• Building some decking at our back door
• Removing a lead water tank with my son( don't underestimate how big these things actually are!!) and replacing with a new CW tank
• Testing but rejecting two wind generators( involved being up on the roof- odd that my neighbours look away when I climb a ladder!!)
• Decorating our hall- upstairs and downstairs
• Relaying crazy paving
• Installing anti-escaping-spaniel-gates
• Building a greenhouse for Elspeth
• Sailed out to see the whirlpool at Corryvreckan
• A ten day campervan trip( my ears haven't recovered yet from the noise levels of a 30 year old Bedford van!) and a few weekends away in the van.
• Holidayed in East Angus
• Holidaying in Croatia
• Holidaying in St Ives
• Holidaying in Kinlochrannoch both last year and this
• Going to Tayvallich this week( west coast of Scotland
• Working on a report with Elspeth on anti commercial sexual exploitation of chilkdren issues
• Working on establishing a Centre for Rural Childhood at UHI
• Now doing preparation work ( demolishing wall/rerouting plumbing for a new bathroom
• Now renovating a 26 year old Dahon Classic folding bike
• I've also decided to get back on my bike as its actually easier for me than walking given the leg with the pin in it and where I've had at least 3 clots. My consultant has agreed to let me do this though he did note wearily that he'd prefer it that I didn't fall off.

And all the other things a family do. I don't make any claims about how wonderful this is- all I'm saying is that having had warnings last year about going to the football stadium in the sky, we've still been able to do a lot. In fact I must go and have a lie down!!- even writing the list made me tired!! But to others out there- keep going!

This wouldn't of course happen without the support of Elspeth and the kids( kids!- do you know how old they are Stewart!!) and with the continued friendship of many people. One of my friends says my illness is costing her a fortune- she prays for me ( I'm not a religious person but welcome the fact that someone who is a friend might want to pray for me) and she has been wearing out her prayer mats kneeling down. To help her out I sent her a copy of an advert from Screwfix Direct for industrial trousers with inbuilt knee pads. I think this is easier on her but she is now on her 4th pair already! Expensive business.

Elspeth and I were discussing the fact that, although I personally don't go down the complementary or alternative therapy route, being active and doing things- and lots of new things- is my own form of alternative therapy. I also have to acknowledge that I've been very fortunate in that though I have clearly been pretty ill some times, I've also been very well at others. I also seem to have less bone pain to deal with than other myeloma colleagues ( though plates in two arms and a tibia nail was a bit tiring and wearing). What I also have to acknowledge and I don't know where it comes from- I've been able generally to remain quite positive- though about 3 weeks ago I did find myself letting go a bit in a routine hospital visit with the tears flowing. Ach well- we're allowed to let go now and again. Be a bit surprising if we didn't.

I knew it!!

Thanks to Cameron for his reminder I had said nothing about how well Brechin City were doing- top of the league. And then what happens after he emails- they lost 5-1 on Saturday. Cameron- now you know why I don't mention them when we are ahead!