Wednesday, October 14, 2015

Bobbing Up and Down

FL and I have been spending more time in waiting rooms.
I am so very glad I knit.

Last week he had a Radiotherapy appointment to try to reduce the pain in his upper arm.
I knitted a hat.
It is the Qwist by Melanie Berg - it is a gorgeous pattern and I plan to knit the matching mitts.

There was a squirm-worthy conversation with the Doctor who asked me if I lived with him or if he lived with me?  Um... we live together.  "Oh!  That's lovely!" she said.
I was too tired to explain that I thought this was normal behaviour among married couples.
I mean.... ach! 
Words fail me sometimes.  The assumptions people make...!

Sock One = Monday
On Monday, we saw the Consultant again.
She spent a long time quizzing FL about his symptoms and staring at her computer screen.
She doesn't know what to do for the best.
His Freelite score is bobbing up and down around the 160 mark (I am not sure if this is the ratio or the difference between his kappa and lambda - she seems to report it either way.)

  • His blood is showing an increasing immunological reaction to something unknown, probably a drug.
  • His kidney function is not as good as it has been.
  • There was a query around his potassium level, so she tested it again.

The Consultant did not want to risk prescribing Pomalidomide until she was sure that the superdrug was not to blame for his symptoms, so she ordered a bone marrow test for this coming Thursday.
She advised us to wean him off the Gabapentin he has been taking for his nerve pain (post-shingles), as it doesn't appear to be helping and may be doing harm.
Sock Two = Wednesday
On Tuesday morning, a doctor rang FL at home.
I was at work, stuck in a 3 hour long meeting.
When I came out, I discovered FL had been trying to ring me all morning.  He said the hospital wanted him to come in asap... but he didn't know why and he had told them it would have to wait til Wednesday because I was in the city and he was home alone on the farm.
I am a Bad Carer!
I tried to contact the hospital but the doctor was not available.  The receptionist said just to bring FL in the next day (today).
At 4.30, a doctor rang me back and said his potassium level had increased significantly and was a cause for concern.
"If he deteriorates overnight, just bring him straight in!"
Thanks.  I feel really great about this.

So we didn't get much sleep.

Today (Wednesday) we spent 5 hours in the waiting room to be told his potassium had fallen slightly and his kidneys appear to be coping.
So they sent us home again... until tomorrow when he will have his bone marrow test and they will check his blood again while he is there, "just in case".

Meantime, I had to ask a work colleague to cover a meeting for me at very short notice.
My future role has not been confirmed, despite a polite email to the boss.
Some parts of my job (but not all) have been moved to a different section.
FL thinks I need to read between the lines...

Fun times.

But the good news is that Rachel Coopey has brought out her own line of sock wool, Socks Yeah! You can order it from Purlescence, Suffolk Socks or Meadow Yarn.
I certainly have! :)



21 comments:

Lynn said...

I wish there was a way to speed some of this up and let you have clarity. Nothing is worse than pondering the outcome of events you cannot control. The last thing you needed right now was ambiguity about your job on top of all the medical testing. I hope you get some answers soon. As always, I wish you peace.

Jodie said...

I to wish you peace. It always seems (to me, anyway) that it never rains but pours. For me, nothing is worse than not knowing, so I can only imagine how stressful your life must seem right now. Know that you have a world-wide circle that is thinking of you both. Be sure to keep taking care of yourself.

Isabella said...

Have you spoken to your union rep about the problems you seem to be having at work? They may have some useful advice to give. My OH is the union rep for his department and he's always saying that folk come and see him after they've been struggling with things for ages when he could have helped them much earlier. The rep is not just there to go into battle against employers, s/he is also there to provide support if possible.
And if you're not a union member, join now. It takes three months for a membership to become active with many unions in order to get full support.

CarolS said...

I'm in total agreement with this advice to go to, or join immediately, your union. Best support you could get in the circumstances.
All the very very best to you and FL

K.Line said...

Lord - it's all insane, all the time! I'm giving you both lots of good thoughts. You will prevail!

liza jane said...

Ugh, no fun. I am sorry you have so much hanging in the balance right now. Sending lots of good vibes your way.

Athene said...

A regular reader but not a regular commenter, I just wanted to send you good wishes (and admire your knitting). You're an inspiration in very many ways. I second the advice above about Union help, if you belong to one.

Laura said...

Oh good grief, so much to-ing and fro-ing. Hope all goes well with the bone marrow test today, and that work gets a shufty on sorting out who's doing what.

Much love to you both xx

Susie Hewer said...

(((Roo))). You and FL are really going through it yet again. Sending positive and supportive vibes your way xxx

Linda said...

((HUGS)) to you from down south. I hope that the bone marrow test goes well, and that you get some treatment to go forward with. Sorry about the stress around your job. Sounds like a good idea to contact your union. Hope things calm down for you soon. X

Mairead Hardy said...

Thinking of you both and sending all good wishes and positive vibes I can.

Coco said...

Thinking of you and FL. I admire your strength and abiding love for one another. I know that can't take you all the way through everything you two are experiencing now...that you must of moments of great private disillusionment. But I do think you're blessed with a rare relationship and partnership - and you seem to be aware of and grateful for that. Hoping for good and best.

Polly Pierce said...

Hi Roo, I've been lurking for a couple of years now but today I feel compelled to comment & say how sorry I am to hear that things aren't goods for you both at the moment. All we your readers can do is wish you well& pray for some improvement.

Nita said...

(((Hug)))

Judy said...

My husband is 20 years older than me and a man commented last week he couldn't work out our relationship. When I gave the same surname as my husband's he was shocked - I explained that married couples usually share the same surname.
Sending long distance hugs to you.

lilysgrannie said...

I miss your posts and so sorry that you and your husband are experiencing so many adversities right now. Sending my best thoughts your way from California!

Scruffybadger said...

Another load of hugs and love being sent up to you both from me too. xxx

Linda C said...

If it is not this, it's that, and usually it's both. My prayers for both of you all the time. And much love too.

LindaC

jessica said...

Aaaaaaaaaahhhh - so much going on right now for you and FL, thinking of you and sending two big hugs from the Pacific NW.

Daisy said...

Another age gap relationship here - he's 19 years older than me, and some of the stuff people come out with... I'm expecting our first child, and I get a lot of stuff about being an older mother (I'm 36!), whereas he just gets "Good on you"!

Twelfthknit said...

I was on Gabapentin for nerve pain about twelve years ago. Messed with some of my white blood cells and I ended up with neutropenia. Was resolved when I stopped takingnit