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 was:

A red onion. I didn't have a picture of Mike's patches, but I swear they were very, very similar to the close up from last week.

Talking of Mike, the nice gastro man decided that a course of steroids might help. Although not as bad as dex, they are still making him eat anything not nailed down. It is going to be an expensive six weeks! They seem to be giving him horrendous night cramps too. I wouldn't mind, but his screaming wakes me up. When we saw SB on Monday Mike mentioned the cramps, who said everything looked fine on his bloods and that he didn't think quinine was a good idea given Mike's history.

Look at me rabbiting on about medical stuff when you all came to see what this week's photo is.

I couldn't decide which one to use so I'll have two this week.

Oh and I'm still waiting for homemade gift suggestions.

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.

I'm buzzing.

I'm so excited. The tickets for my first festival arrived this morning. I missed doing the whole wellies and muddy field thing when I was younger, far too sensible and settled down as the little woman, but that's another story for another time. So what with Mike not knowing when the number 90 bus is coming through our door and me having had a deprived and definitely not depraved youth (oh the regrets) we decided that this year a few days in a muddy field in Cumbria were needed.

We found out a week ago that the Saturday is fancy dress. Mike thought he might go as Tina, but I soon vetoed that idea as his legs are better than mine and I'm fed up of him getting the compliments. Funnily enough we were asked yesterday by Dr SB who was going to be the bride and who the groom!!!! Bloomin' cheek. So I came up with what I think is a brilliant idea and I'm going to make us some costumes. Yes, I'm going to sew!!!

In true Lorna style, I am keen to make a start, even though I have curtains to finish (yep still sitting waiting to be hemmed), various knitting projects to continue and several small repair jobs, all of which I should really attend to first, but...... Any way I have found the pattern I intend to use courtesy of a young lady called Dixie I have the pattern sitting next to me. It is going to be so cool.

Thinning Thursdays - week "unlucky for some" 13

I'm late again. Why do I find it so hard to blog on Thursday evenings now? More precisely, why am I having such a hard time blogging at all? Lots of funny things happen, but I have a tendency to forget them by the time I sit down at the computer. I blame Mike.

Easter weekend came and went without much effect. The bank holidays were more an inconvenice than a relaxing holiday. That's the trouble with not having a proper, leave the house every morning type of job. We had another barbie, which everyone enjoyed. I never realised how easy and how tasty homemade burgers could be. Even better is the fact the whole family love the healthier quarter pounders they are presented with. Good news for any overbearing, blame ridden mom who feels responsible for the eating habits of her errant children.

Myeloma news; Mike had his four weekly visit to the hospital on Wednesday. His counts are slowly rising all by themselves, Dr AB reckons it will be a while still until they are good enough for Mike to be let out alone into the world of employment, too many unclean customers, if you get my drift. The good news is that both she AND Mike's consultant Dr SB are attending the evening party when we get married. Hang on that's not such a good thing, they might see Mike drinking 5 litres........... of beer!

Any way, weight loss this week, two and a half pounds. The half I should have lost last week obviously got stuck somewhere and had to tag along with this week's two pounds. That or it's the half a pound of finger and blood I lost when I shut my finger in the car door resulting in a bit of a need for stitches.

False alarm

It turns out that yesterday was a false alarm. I know I could have got back to you all straight away (well when Mike finally got home at 2 o'clock in the afternoon), but by then I was busy doing other things so you have all had to wait. In fact Mike's Hb was actually nearly normal, back to 11.7 where it hasn't been since he was first referred back in December 2009. Even better news was that his creatinine level was 120, yes 120!!!! It hasn't been that low since....... well again December 2009. He has an appointment for Friday to pop back for another blood test ready to see SB on 28th. We will all just have to wait and see what the outcome of those tests will be.

For those who are wondering what the cause of Mike's "My blood feels low" moment was, Dr AB happened to be on the Day Unit and she reckons may be Mike had over done things in the garden on Sunday. I must be more careful with my slave driving in future.

Living in Oz

It is extremely conceited of me, but I like to think that on the whole I have been like Glinda, a good witch. I certainly tried to do everything I could to help and support Mike during his treatment.

Today however I feel more like the wicked witch.

Mike has gone off to the hospital to have his Hb checked and I have stayed at home. It is the first time I have voluntarily not gone to the hospital with him. I do feel guilty, but in reality, what is the point of me sitting there for hours, only for us to be told the same thing as three weeks ago? I do worry about the fact he feels he needs a transfusion yet again, it is only two weeks since his last one. Does it mean his SCT was a failure? Are we about to start the roller-coaster ride of treatment again? May be those worries are the very reason I chose not to go today. If when we see SB in two weeks time he tells us Mike has got to go back treatment, we're both going to be spending a lot more time back at NX.

I'm sure some of you will understand that I need some me time before that happens. I love him dearly, but I have put certain areas of my life on hold. We drive when Mike doesn't feel up to walking, take lifts instead of stairs. My health and fitness have both suffered and I'm just starting to take control of them again. I need more time to build myself up both physically and emotionally. For those times when it suits him, I know Mike is seriously ill and for those times when he is feeling great, together we will conqueor the world.

Too early?

I've spent the last couple of days contemplating Mike's visit to see Dr SB on Monday. Six weeks after his SCT and Mike was told he had achieved a partial response. When I raised an eyebrow of disappointment I was told only 30% achieve a complete response. In blogland it somehow feels like more, but I'm guessing that is because everyone is so positive. Dr SB is hoping that Mike will be approved for maintenance therapy, Mike has more questions to ask before deciding what to do. He has another appointment in six weeks.

The thing that puzzles me is that Mike hasn't had a bone marrow test and the paraprotein level was from blood taken on 28 Jan, which was just under five weeks after his SCT, is it maybe too early to tell what Mike's response has been? Or am I clinging by my fingernails to the cliff face at Dover?

Oh and I hope a friend in hospital gets well soon, I miss her. She'd know what to say to me. You aren't allowed flowers in hospital so these virtual ones are for you.

Fancy meeting you here!

After a fun packed morning on the phone (that's another story) Mike had an appointment at NX (New Cross) with Dr SB today. It was the usual chaos of:

Nurse: You're only booked in for bloods.

Me: But QE said see Dr SB or Dr AB

Nurse: I'll call him.

Mike: He was just going off somewhere with Dr AW, I saw them as I arrived.

Nurse: Oh, they must have been going for a coffee, I'll call his mobile. It's strange, the pair of them have been giggling all morning. (I should point out here they are both male consultants, draw your own conclusions.)

A few minutes later:

Nurse: Go and have your bloods taken and then AB will review.

Mike: OK.

So we duly went off and saw Jodie the local resident vampire (who has a gorgeous staffie by the way). Mike hung around and watched the machine sorting out his counts and then we took the print out back upstairs to be "reviewed".

So we are sitting in the waiting room, minding our own business, as you do, when suddenly we hear a familiar voice enquiring where Mike is. Mike is then greeted with "Hello trouble. How are you?" No it wasn't AB, but the slippery SB. Seems it didn't take him long at Greggs today. Now I might be mistaken, but I think he was actually pleased to see the pair of us. We've always had the nasty habit of making him laugh, goodness knows why.

Oh and counts for today:
WBC: 3.85
Neutrophils: 1.46
Platelets: 45

Green eyed or what?

Well it seems that Mike's jealousy (or should it be envy, I've never quite known the difference) got the better of him, and so, not wanting to be out done by Paula decided he wanted a tea tray of his own. Unfortunately the hotels around here are not quite so accommodating, and no tea tray is supplied.

At first it appeared that he was simply fatigued from the Velcade, but to be on the safe side they asked him to "pop in" last night to have some blood tests done. Four hours later they said everything was OK (relative to what they have been since diagnosis) and to come back today to see a consultant. Well Mike was extremely tired and apart from trips to the loo, slept from 9 last night until 11 this morning, I didn't wake him as I thought the rest would do him good. When he finally came down he still looked terrible. His face is all puffy, his lips doubled in size and his tongue swollen. Every time he tried to drink liquid leaked out the sides of his mouth, he said it was like he had been to the dentist and was still numb from the Novacaine. So after he'd had some brunch we went off to the ward to see someone.

They realised the second they saw him that he wasn't right (is he ever?). We were in very capable hands though, Dr. Rachael, (or it could be Rachel I didn't check the spelling). Mike had seen her on Tuesday and said how efficient (just like the latest gas boilers) and thorough she was. She asked him questions, prodded, poked, listened, tickled (his feet) and tested his reflexes. When it came to his tongue she asked "Does it look big to you?!" Actually she asked if it looked swollen, and I have to say it did, to me it looked twice the size. Assessment complete she went off to consult with Dr SB. A few minutes later she was back, with SB in tow. Mike repeated a few of the details and SB decided it was best to suspend all chemotherapy treatment, possibly ruling out Velcade, and that a MRI was needed to be on the safe side. (My panic at the prospect of no Velcade is overwhelming.)

Dr R went off to arrange the scan and about 20 minutes later came back with a wheelchair saying there was an empty slot now, so there wasn't time to wait for porters, she was taking him there herself!!! (I cannot praise her enough, Thornton's will be purchased tomorrow!) On the journey down she told Mike that she had been told that if anything went wrong she wasn't insured, just as well that Mike and I are old-fashioned and under the circumstances wouldn't think of suing. We have no idea when the results will be in, so in the meantime Mike gets a holiday away from me and the dog.

I did have photos, but cannot for the life of me get them to appear where I want them in the blog.

I'll have a sticky bun with that.

Mike went to the Day Unit for his dose of Velcade on Friday. As usual they did all the blood tests before hand, just to make sure he still has some left in him to dilute it down. It all looked really promising for a quick get away, the Velcade was there waiting for him, so it was only the formality of the blood work that would cause a delay, and what a delay. An hour and a half later the results came back (it was 5 o'clock by now) and showed that Mike's kidneys were not doing too well (creatinine 166 μmol/L), so he had to sit there for an extra hour having a saline drip and have another blood test this morning.

We got to the ward nice and early (8:30) as requested to collect the blood forms with their "urgent number" on them. We went downstairs to get the blood drawn (no not a pretty picture), took the print out of counts and a sample back up to the ward and then we were told we would have to wait about an hour for the lab to do the kidney function tests, so we might as well go and have a coffee. Back downstairs and into the main hospital to Greggs for coffee and a bacon sandwich.

Now this is where things become really surreal. Mike was due to see his consultant next on May 10, but we received a letter on Saturday changing the appointment to May 17. Oh well we thought, there wasn't much difference and if there was a problem, we'd soon see someone on the ward. So we're standing in the queue at Greggs, waiting for our bacon sandwiches (well buns actually) when who should pop up behind us......... Dr SB himself. He instantly started chatting to Mike about how he was doing, had he got the results for today, how was he feeling now? Mike said he was feeling fine, pointed out that he had been fine before his last Aredia infusion, and asked about whether he should go ahead with the treatment due tomorrow. In essence Mike had a complete consultation. He was given a new dosage of the drugs he is taking and given a new appointment time, all while standing in the queue at Greggs in the middle of the hospital! Bottom line is, you can't get a proper appointment to see him in clinic for at least four weeks, but you can go and buy a coffee and see him straight away! We sat and drank our coffee and laughed until our sides hurt. I'm not sure what it is, but SB has the ability to instantly put us at ease, and have us giggling hysterically at nothing! The contrast between him and his colleague SH is startling, as they say, chalk and cheese.

(Mike's creatinine was 155 μmol/L today and Dr SB has cancelled all Aredia infusions.)

A foot note, above it all.

I try not to bog the blog down with too much negativity, but sometimes things just have to be said. Because of Mike being so ill over the weekend I thought I'd try and find out why. Yes we'd been told that Aredia (pamidronate disodium) can cause slight flu-like symptoms, but may be neither of us has ever had flu or at least not the type of flu Aredia mimics! A simple search found the manufacturer's site. OK some of the words it uses are a bit medical, why say temperature when you can say pyrexia (not the oven-proof stuff it turns out), but even so the first few lines contains the instructions in bold:
"Due to the risk of clinically significant deterioration in renal function, which may progress to renal failure, single doses of AREDIA (pamidronate disodium) should not exceed 90 mg and the duration of infusion should be no less than 2 hours."
And that is for breast cancer patients it turns out! For myeloma patients, whose kidneys have a hard time of it any way, the time in the prescribing leaflet is four hours!
Mike's infusions have been taking one and a half hours. No wonder Dr SH (weekend consultant) thought his kidneys were failing!

Mike has an appointment to see Dr SB (his own consultant) today and he intends to raise the subject of Aredia with him. That and the fact that Dr SH thought it wise to prescribe Augmentin and Clexane on Mike's discharge when the leaflet for Augmentin clearly says not to be taken with drugs to prevent blood clots! Now would it surprise you to learn that Dr SH's first qualification was as a pathologist, his second as a paediatric haematologist and that his job before arriving at our hospital was Head of a haematology lab? To quote Mike "That was why he was trying to kill me!"

" If I were a rich man"

Oops, wrong movie, that's Fiddler On The Roof.
But then again I'm on my dex again so maybe relevant....lol.
Today at the day case ward for my Velcade was uplifting. Not only was it on the second floor, I learned that the treatment only takes 3 seconds once they have set up the cannula and best of all I overheard a nurse say " these must be the wrong notes...he's never 55 yrs old!" She took loads of persuading over a good few seconds before she believed the Sister....lol.
I can feel a trip to Thorntons coming on before my next appointment.
On a more serious note, I'm relieved that finally I'm on treatment again and I'm very thankful that the staff have assured me they will do their level best to get me out and back to work quickly whenever they can.....bless them xx.
I got to see Dr.SB again unexpectedly because no consent form had been done for the Velcade, and apparently they can't kill me without permission (and I am quoting the Matron here). He appeared pleased to see me and asked how the haematuria was, (notice he used the technical term when he spoke to me...polishing nails on lapel.....lol), and then nearly fell off his chair laughing when I quoted an article that had put my mind at rest, that Lorna had found on the trusty Internet. It was in relation to the blood in urine problem, but was written by a VET. I tried to explain that we are all animals, but he just kept laughing for some reason.

Mike .

Goodbye Mr. 'T'

No I don't mean that Mr. T but Mr. Thalidomide. Dr SB has decided that under no circumstances will he be prescribing aspirin for Mike and no aspirin means no T. So next Monday Mike has an appointment for his first dose of Mr. Velcade to be taken along with Mr. Dex (he doesn't mind me shortening his name!) I'm sure the drill will be familiar to some of you, I'm not too sure how two days of Dex followed by one day off will work out, but at least there is the ten days off to look forward to. Our biggest issue is of course that Mike only gets one day off in seven, so treatment will have to be done on two half days, resulting in no real quality time until the ten days off.

I shouldn't laugh really, but Mike has been on so many tablets in just a few weeks that his record sheet is starting to look like a pharmacy stock take! In the meantime he is still taking his Mesna (affectionately known as Mensa, he has a very intelligent bladder now), ultra-sound on Thursday (I hope it isn't twins) and a nervous wait to see the urologist who will be doing a cystoscopy (I think I'll pass on the holiday snaps from that camera.)

I think I'm going to relax and enjoy the peace and quiet for now. I get the feeling things may soon be getting hectic again!

Yes I'm moaning again

Does anyone else have days where you get out of bed grumpy and angry at the world?

That's exactly how I feel today. Now I know that mm is far from being a picnic, but right now I'm completely p***** off that having waited a month to start treatment, Mike didn't even manage a week. Now we have to use his day off next week to go and see the consultant Dr SB. But why? Mike hasn't been given an appointment with the urologist yet and as the appointment with Dr SB is Monday afternoon, it doesn't seem likely he will have. So if he won't (or doesn't think it wise to, ) continue treatment without further investigation, why drag us in?

I was reading feresaknit's blog earlier and Tim's Wife (all this code name stuff is so exciting) suggested that us MM women be we carers or sufferers need a holiday, damn right we do. I don't know if it is just me, or whether other women have the same experience, but when I get PMS or just generally annoyed, I let rip, no holding back. When I'm done and the rage has past I am quite capable of looking back and saying "yes I was in a bad mood darling and I shouldn't have taken it out on you." It seems men do not have quite the same reaction "I wasn't in a bad mood, nothing to do with the drugs." I try to be patient and understand, but my patience is just about used up with all the disturbed nights, hospital trips and worrying.

And to top it all, I read on The Myeloma Beacon an article on "The Impact Of Age At Diagnosis On Myeloma Patient Survival." I suggest no-one else does it's very depressing.