My SBC Journey - Nic

When were you diagnosed with SBC?

June 2017.

How were you diagnosed with SBC?

 Weakness in my right arm started mid-2015, which became increasingly weaker, more painful, resulting in total loss of movement & chronic neuropathy in Feb 2017. 

After falling through the appointment net for several months, I finally had an MRI on 07/06/17, a Wednesday, in preparation for surgery- ACDF (Anterior Cervical Discectomy & Fusion.) Fifty-five minutes after leaving the hospital the radiographer rang to say he’d “seen a lump in my neck & unfortunately had to refer me back to oncology.”

Was in the hospital the following Tuesday, had CT, told me on Wednesday there were multiple nodes in both lungs & they needed a biopsy from the lesion in my brachial plexus (shoulder) as it would be easier to access than a lung biopsy. Took a week to assemble a team, a further week for the lab to confirm SBC. Saw an oncologist on June 21st, started chemo on June 29th.

What has been your treatment Journey?

I was diagnosed with Sjögren’s Syndrome a few years earlier, and an oncologist told me this makes my cancer treatment “problematic.” 

I decided I’d have Paclitaxel for 18 weeks-took 6 months as neutrophils kept dropping. Week 1, the nurse trying to insert the cannula gently asked if I’d heard of a PICC. Told her yes, I was prepared for that as I knew my veins wouldn’t last for 2 weeks, let alone 18. PICC line was inserted ready for #2 infusion. Taxol was reduced twice within 6 weeks, with the final 12 doses being at 70% of the starting dose.

Soon as chemo finished I started on Letrozole 2.5mg. Side effects weren’t too unbearable but definitely built up as time passed. 

 My arm remains disabled. Constant neuropathy is tough going. 

What would have helped make your journey so far easier?

Being in touch with other SBC patients sooner. I found this group on Facebook about a year after chemo finished - I felt very low, isolated, no one could possibly understand the emotions & crazy thoughts that invaded my head in the blink of an eye, the uncertainty of living with SBC. 

Reading the experiences of others with even vaguely similar symptoms or treatment helped me feel less isolated, gave me much needed hope! I did & still do try to read the more positive posts. But if I see anything I can relate to I will comment with a little helpful encouragement or suggestion. 

What advice would you give someone who has just received their diagnosis?

Find a support group ASAP! Facebook is a good place to start looking - you’ll find something which will fit your needs. 

What is your favourite holiday destination?

Holguin, Cuba! Been 4 times & would go again in the blink of an eye if I could!  

Do you have any great TV/film recommendations?

Movies:

Mama Mia!

The Guernsey Literary Literary And Potato Peel Pie Society

Fighting With My Family

Made in Italy 

Girls Trip

Hampstead

Saving Grace

TV:

QI

Our Yorkshire Farm

Would I Lie to You?

Why Women Kill

Schitt's Creek

Wallander

The Bridge

Line of Duty

Bloodlands

Ru Paul’s Drag Race

Favourite books?

The Thursday Murder Club by Richard Osman 

A Thousand Splendid Suns by Khalid Hosseini

River God & The Seventh Scroll by Wilbur Smith

The Girl With the Dragon Tattoo, The Girl Who Played With Fire, The Girl Who Kicked the Hornets Nest by Stieg Larsson 

Eleanor Oliphant is Completely Fine by Gail Honeyman

Anything by John Grisham, Peter James, David Baldacci, James Patterson, Maeve Binchy, Cathy Kelly, Marian Keyes...and many more!