Wednesday, August 12, 2015

SOBOE with a Clinical Fellow

This is one for the Myeloma fans.
If you do not have a taste for blood, come back another day when I will have some sewing and / or knitting for you.
Enjoy the photos of my garden and scoot past the words :)

It was FL's regular appointment at the hospital yesterday.
Last month they ordered scans of his heart and lungs, but neither appointment has come through yet due to the length of the queue.
Meantime, he has been very tired and in significant pain and has not left the house unless I have been there to escort him out into the garden.
He spends his days sleeping until I come home from work.
If the farm labourer is around he sticks a "Do Not Disturb" sign on the door.
He complains that the news readers on tv are no longer speaking sense (he may have a point...)

Yesterday we saw a Clinical Fellow - a job title which makes me laugh. Very PG Wodehouse!  I wonder if one has to enjoy playing cricket and boating on the river to be a "Fellow"?!
He was a Very Fine Fellow indeed :)
Concentrate Roo!

This Fellow was clearly familiar with FL's file, even though we had not seen him for about 7 years.
He listened to what FL was saying about his symptoms over the past few months, and decided to do a back to basics set of tests - blood pressure, heart rate, oxygen levels.  He sent FL for a couple of chest x rays - to assess the state of his ribcage and his lungs.  And he ordered a ct scan of the same area, as the queue for ct scans is shorter than the queue for mri scans.  That should happen next week sometime.

The x ray request said that FL had "increasing SOBOE", which I had to google.  It stands for "Symptoms Of Breathlessness On Exertion".  Who knew?!  I love a good acronym :)

But probably the most important thing the Fellow told us was the result of FL's last Freelite test - the measure of his Myeloma.
The basic number is now at 200 (July blood).  It was 129 in June and 148 in May.
That looks like an up and down picture until you look at the ratio between his kappa and his lambda light chains.  And the Consultant, you may recall, is all about The Ratio.
The ratio has gone from 17 to 19 to 24.

As the Fellow said:  it looks as if we have to accept that the Pomalidomide is no longer useful.

However, we left the hospital with another (final?) month's supply of the superdrug.  They also decided to try him on Gabapentin instead of Amitriptyline for the nerve pain. Because until the doctors have a clear picture of what is going on, they have nothing else to offer.

So there you have it.
Another month of waiting and sleeping and knitting and staying calm.
We got permission to rearrange the date of his interim blood test so that we can have a holiday on the West Coast.
Now that I can drive FL's car I have no excuse not to put on my big girl pants and do a long drive.  At least there are no motorways to contend with.
I just have to find a dog-friendly holiday house with no stairs, a shrubbery and comfy cushions.

Fun times!


sulkycat said...

Gabapentin user here too (along with Tramadol, Amitrip. etc etc, the joys of RA). Do keep half an eye on FL, Gabapentin sent me even more doolally than usual so now I tend to only take it when the pain is at its worst. Sending stoic Yorkshire vibes to both of you - enjoy that lovely garden!

Lorna A said...

Oh Roo, I don't know what to say. Obviously stay calm, knit and enjoy your break away. Here's hoping that your big girl pants are only needed for the drive!

Love and hugs from us all. x x x

Wakeymakes said...

My dads on pregabolin like gabapentin as his treatment was thalidomide and it gave him periferal neuropathy. He sleeps a lot but they keep him going. We are just a bag of chemicals. He has had so many new treatments in the last few years. Myeloma has seen a lot of changes. Good luck for next week K xXx

Su-z said...

My best thoughts are with you. I know it can be so difficult. I'm sure you know how important you are to his comfort, but I will remind you anyway. Enjoy your break!

Sabs said...

Gonna have to correct you Roo I'm afraid. It's "short of breath on exertion"... I'm trying to get as many people as I can to use CCV at the mo - "cough cough vomit" to see if I can coin an acronym! Hope things get better for FL and you soon, hopefully the holiday will give you both a well deserved rest xx

Susan_in_Peckham said...

Sending you and FL good thoughts and energy
Your garden is glorious - some of the photos almost look like paintings
I hope you have a relaxing holiday with good weather.

jessica said...

Oh Roo, the waiting and staying calm can be so hard when it happens over such an extended period of time - I hope you are taking care of yourself, knitting (lots of knitting!), and that this holiday house appears soon! Stay strong and stay present, have a rant if you need to (or three), wrap yourself and FL in a favorite handmade if that helps :-). Sending you love and support~

Lynn said...

I am sorry your news was not better. Thinking of you and wishing you both peace.

Coco said...

I think of you and your FL often. Sounds like this is a difficult time, I so hope things turn around. Any possibility of the new drug being offered? the one being tested in Melbourne? Meanwhile, you're both in my thoughts, and I hope you enjoy your coming trip. Your flowers are astounding.

K.Line said...

As always, giving you both good health and calm vibes. xo

ambermog said...

Thinking of you both, sending spare pair of big girl knickers for car journey just in case;)

violicious said...

Enjoy your holiday. Big girl knickers......and tv presenters don't make any sense!

Roobeedoo said...

Thanks everyone! Sulkycat - thanks for the warning about going doolally ;)
And thanks Coco for mention of a new drug in Melbourne - sadly a bit of a long trip from Scotland, but you never know - at least it shows there is always something new under development.

liza jane said...

Thinking of you. Sending good vibes your way. But FL is right about the news readers!

Charlotte said...

A candle burning for you both here in Montana. Drive safe and enjoy ...

Janine said...

I feel very sad reading this. I hope you have a precious time away. PS your garden looks lovely.

Twelfthknit said...

Hope holiday goes well

Ms Goodenough said...

Your garden pics are wonderful, but, I did read the words too and am sorry to hear all of this. Enjoy your holiday x