Residual Current Devices save lives.

An RCD, or residual current device, is a life-saving device which is designed to prevent you from getting a fatal electric shock if you touch something live, such as a bare wire. It can also provide some protection against electrical fires.”

I’ve always thought the blog should be educational among other things, and today’s post is hopefully that.

We went off to see Dr SB yesterday afternoon, an emergency appointment arranged on Friday. As we walked in his face paled (well I think it did) and the first words out of his mouth were “what’s wrong with you?” They weren’t directed at Mike but at me, dear SB obviously thought I was ill (got cancer) too. He was visibly relieved when I told him I had shaved my head for Myeloma UK. 

The consultation seemed to go on for ages and by the end of it Mike had a prescription for RCD, Revlimid, Cyclophosphamide and Dexamethasone. along with the usual antifungal, antiviral and antibiotic, blood thinner and stomach protector. 

This morning’s tablets.

Dr SB didn’t say whether it was going to be one or two cycles, we’re guessing two as they are hoping that Mike will be ready for his SCT in April (I’m not holding my breath though.) 

So today’s lesson is: 

RCDs save lives, whether by protecting from electric shock or by destroying nasty myeloma cells. 

Houston, we have a problem.

Houston, we have a problem. 

  • SB unavailable yesterday. 
  • SL covering clinic. 
  • Paraprotein level from Dec 2016 appears to show insufficient reduction. 
  • PM SCT expert unavailable until next week. 
  • SL liasing with SB as to what to do. 
In other words SCT is currently cancelled until further notice (we have twisted arms and got an appointment with SB on Monday). Mike might have to have further treatment / bleaching (Mike’s phrase).  I’ll keep you all posted.

A very lonely and cold lollipop. 😔 

The Lobster Quadrille

“Will you walk a little faster?” said a whiting to a snail.
“There’s a porpoise close behind us, and he’s treading on my tail.
See how eagerly the lobsters and the turtles all advance!
They are waiting on the shingle – will you come and join the dance?
Will you, won’t you, will you, won’t you, will you join the dance?
Will you, won’t you, will you, won’t you, won’t you join the dance?”

“You can really have no notion how delightful it will be
When they take us up and throw us, with the lobsters, out to sea!”
But the snail replied “Too far, too far!” and gave a look askance –
Said he thanked the whiting kindly, but he would not join the dance.
Would not, could not, would not, could not, would not join the dance.
Would not, could not, would not, could not, could not join the dance.

“What matters it how far we go?” his scaly friend replied.
“There is another shore, you know, upon the other side.
The further off from England the nearer is to France –
Then turn not pale, beloved snail, but come and join the dance.
Will you, won’t you, will you, won’t you, will you join the dance?
Will you, won’t you, will you, won’t you, won’t you join the dance?”

The nonsense of Lewis Carroll seems fitting in this topsy turvy world in which we live. Are you sitting comfortably? Then I’ll begin. 

Last Monday Mike was called by the renal nurse at our local hospital, she had been asked to do so by his renal consultant. So on Tuesday off we went to see her. Mike went I think with the idea that anything she had to say was for far off in the future, the reality was slightly different. In her opinion it seemed that dialysis was far more imminent than either of us had suspected, it had certainly not been implied by the consultant. Mike was obviously shocked as he was talked through the options. After two hours we came home and we discussed what we had been told. The jury is still out on what Mike will decide. 

The up side of the meeting though was that she explained that the toxins building up can cause sickness, shortness of breath, lethargy…… does any of this sound familiar. I’m rather annoyed that the renal consultant has been choosing to ignore my remarks for the last nine months, preferring to hear Mike’s usual “I’m fine” while I interject “he’s been very lethargic and short of breath” the sickness being only a recent symptom. (Moan over.) Mike is hoping that given a bit of time his kidneys might rally. 

The jury is also out on what is happening myeloma wise. There is a definite increase in the light chain ratio, which isn’t good news, although the paraproteins are stable and the BMB showed around 10% myeloma cells. Dr. S.B. wants to see what is happening in a month, as he says, nothing with Mike follows the normal path. 

Mike’s platelets and neutrophils have improved since December, which is a good thing, his HB however is still at a level that Mike finds it hard to cope at so this morning, against hospital policy, Mike is having a small top up. Dr. S.B. wants to see if it makes him feel any better. 

There seems to be more questions than answers at the moment.

Will he won’t he, will he won’t he, will he join the dance?

What a difference a day makes.

It is amazing what a difference 24 hours can make. Since blogging last Monday we have had our ups and our downs which we will share with you all soon. 

Generally Mike is so much better, not perfect, but a lot better. Like the above comment we will share our thoughts on the subject with you soon.

This morning I woke to find that my Tête á Tête dwarf daffodils have started to bloom. 

Excuse dirty pot….oops!

A tiny ray of sunshine to brighten a grey winter’s day. Let’s hope our later trip to see Dr. S.B. doesn’t darken our mood. 

Go jump off a bridge!

Or not as the case may be. Mike spotted last week that Myeloma UK are holding a sponsored abseil off the Forth Rail Bridge to raise funds. It turns out that his family used to visit relatives in Edinburgh and as a child he had always wanted to go up there rather than stand at the bottom and watch the man painting it on his little seat on a rope. So Mike of course called them up and asked if he could, as a Myeloma patient, take part. The nice lady on the other end of the phone said “oh, well, I’m not sure whether it is advisable or not. I’ll have to speak to a colleague and call you back.” A minute later he got a call saying that if he signed a disclaimer and got a letter from his consultant then yes he could take part.  

It just so happened that yesterday afternoon Mike had an appointment to see the rather marvellous Dr SB so after the pleasantries of everything is still under control and you are doing better than I expected (the later more implied than said) Mike raised the issue of the letter. I’ll skip the conversation that followed and simply say Dr SB won’t be dictating to his secretary any time soon.  He did say “can’t you find a safer way to raise money? Surely there has got to be an easier way?”

Mike reckons he just wants to keep his favourite guinea pig alive, which I wholeheartedly agree with. 

The long and the short of it.

To answer Sandy’s comment, no Mike is not still standing on the podium, I really am that short. Actually there isn’t that much difference in our heights, only eleven and a half inches, not even a foot! I have suggested several times that we swap legs to even things out a bit.

On Monday Mike had his appointment at the hospital, gosh the three months have flown by. We were called in by the HCA only to be greeted by a registrar. Panic! The last time we were seen by a registrar rather than SB it was because the news was bad, very bad and I instantly thought “great, it’s on its way back and SB won’t tell us.” I needn’t have worried, Mike’s pp is still less than two and everything is fine.

Which is more than I can say about my sinuses, five weeks later and after a week of TWO anti-biotics I am still suffering from the jaw pain that causes my teeth to hurt when I eat or drink or simply lie still. Back to the doctor’s later.

What’s That!?! 5

As some kind soul suggested, last week’s photo was indeed a nasty patch on Mike’s skin, that appeared about six weeks after his SCT. Nothing seemed to help and eventually he was referred to a dermatologist. The only trouble was, that by the time they eventually saw him, the patches had gone away.

So the answer to last week’s puzzle

Wonderful Wedding

Thank you all for your very best wishes, we had an absolutely wonderful, fantastic, special day. I promised we would share our photos with you all so here is the link to our album on Photobucket:

Wedding Album

Or Flickr here:

Wedding Album

I only wish I could post the joy we felt to be sharing our special day with people who mean the world to us both, especially those who’s journeys were long. As always seems to be the way, there were some who couldn’t make it, they were missed. Special thanks to Dr SB, who only stayed for a short while, I think he came to make sure Mike wasn’t over doing it.