It never rains...

This blog is about my experience with myeloma. Anything else is wandering off-topic. But - as Dr.Ko said to us back at the beginning - Sue and I are both in it together. Both affected by it, and both part of the journey through it.

For some time now she's been getting soreness at the top of the chest and slight breathlessness when walking, although not always exercise-related. She took it to her GP and got a referral to an NHS cardiologist. That was four months ago, and the appointment came due while I was in hospital. My haematology consultant Dr.Ch said to me when I told him about it "That's good, it's usually six months for cardiology".

Results: angina, and a 90% chance of Coronary Artery Disease.
Next steps: an echo cardiogram and an angiogram (involves injecting a dye to make the insides of the arteries show up on an X-ray, looking for narrowing that would restrict blood flow and oxygen transport to the heart muscles). NHS date for that: December 11, six weeks away.
So she's decided to use her private health insurance and have this done at Springfield. The date: Monday 4th - early next week.
I'm not going to speculate here about what might come next. Not until we have those results, at least. But as anyone who knows Sue will understand, her main concern is to get it dealt with as soon as possible.

The timing could, of course, have been better. But we are where we are, and all that. It may be just a matter of a few lifestyle changes. We'll deal with it, one way or another.

Zometa (01/11/19)

For the sake of the record: I had my third Zometa perfusion today before coming home - a few days early, but not enough to matter. I spent the waiting time and the saline flush time by reading the threads about Zometa side-effects on the Facebook Myeloma group. If it's all to be taken at face value, some people have a really hard time with Zometa, but I haven't had any side-effects at all. So far, of course - three treatments aren't enough for long-term cumulative effects to show up. Fingers crossed for later...

Back home again (01/11/19)

It was inevitable that I would pick up an infection at some point during chemo. Everybody does. Luckily - and largely due to Sue and the digital ear thermometer - we caught this one early and seem to have dealt with it before it became a major problem. Several lessons to be learned from that!

The chest X-ray for "suspected left basal pneumonia"showed "some linear atelectasis at the left base with blunting of her costophrenic angle in keeping with the suspected pneumonia." Translated, that means some collapsed alveoli (air sacs) at the bottom of the lung - but not fluid-filled, which would be worse. The costophrenic angle is where the ribs meet the diaphragm, and 'blunting' suggests an accumulation of fluid in the membranes surrounding the lung. With a bit of luck, both of those should be back to normal by now.
The blood cultures showed nothing at all after more than 48 hours, so whatever infection there was never really got going before we hit it with the IV antibiotics.

I now have a 5-day course of yet another antibiotic (oral this time) before going back to the usual two for the rest of the chemo. Dr.Ch says to take this week as the "week off" for this cycle - so we do the next Velcade injection and two days of dex next Wednesday, which puts subsequent cycles back on the original schedule. All I have to do is make sure I don't get another infection...

Anyway, the people at Springfield were all wonderful. Excellent care, good food (if perhaps rather too much of it considering the lack of exercise) and as pleasant an environment as you could reasonably hope for. 

Might be worth adding that the X-ray report also mentioned "myelomatous expansion of the right third rib". We know about that of course - it's the likely explanation of what I thought was shoulder-blade pain some time ago - but this suggests that the steroids haven't had much effect on it. I shan't be surprised if we end up doing some radiotherapy on it at some stage.

Still in hospital

Until Friday morning at least. Got to finish the course of intravenous antibiotic (Tazoscin? ) here before they let me out.

Another notch on the reality stick

Felt a bit low last night. went to bed and woke up two or three hours later shivering cold. Thought it was just a cold night so put a dressing gown on top of the duvet and a pair of socks on my feet and that seemed to do the job. Went back to sleep and woke up at a sensible time but feeling bad and tired out. Sure very sensibly got the digital ear thermometer out and i was 38.5 which is high enough to be a problem.  So we got on the phone to the Oncology Centre, had some bloods and a chest x-ray done, and the outcome is that I'm being admitted for a couple of nights while they work out what antibiotics I need and fill me full of them. Obviously I've picked up an infection of some sort.
It's a valuable reminder that although things have been going well so far I am in a more vulnerable state than normal and need to be more thorough monitoring myself. If I'd been a bit quicker on the uptake I might have spotted the raised temperature a few hours earlier, although I'm not sure that would have made much practical difference in the middle of the night. 

Live and learn, I suppose. Be more careful!

Feeling sorry for Sue who has lost a whole day dealing with this, and most of tomorrow as well. In some ways it messes her life up more than mine.

28/10/19

We saw Dr.Ch again today to monitor progress. He seems very happy with how things are going. We now have an official Stage under the Revised International Staging System: I'm Stage One. Which is good. Better then Stage Two, and etc.. He also thinks it likely that I'll need just four rather than six cycles of chemo before the SCT (stem cell transplant), which puts the date for that into early March. That would mean most of the rest of March in hospital, followed by April, May, and into June for the recovery period at home. If all goes well, of course! And - assuming the insurers cooperate - it'll be at the London Clinic in Marylebone, where they have some of the top people for these things.
Next thing is another weekly shot of Velcade on Wednesday (which means another two days of Dex with the inevitable sleep-disturbed nights again), and a week after that I have another Velcade and a Zometa infusion as well. Plus the usual bloods at every opportunity.
Also on Wednesday (afternoon), just as a reminder that other things go on as well, I have to take my hearing aids into Specsavers for an update.

Blockage

It must be said in the interests of a complete record: today was the most constipated morning of my life so far. I shall have to upgrade from Sennakot and an evening shot of prune juice to something rather more potent, because I don't want to go through that again...
I'm not going to wish for the alternative side-effect of diarrhoea, but just a little balance between the two would be welcome.

Anyhow, having (eventually) got that out of the way we went to the local Sorting Office to collect a couple of packages of hoodies, t-shirts, etc. from Myeloma UK and went for a very pleasant walk'n'roll in Hylands Park. Lovely late autumn day in the sun, lots of people out with their dogs, and a decent coffee and cake in the Stables courtyard cafe. All left me tired enough for a good doze through the afternoon - stamina is certainly not what it was.