Sarah is 49 years old and was diagnosed on July 12, 2022 with Mantle Cell Lymphoma.
She will finish her treatment in the New Year, and then undergo a stem cell transplant.
Initially being dismissed by her doctor, it took more than 12 months to reach a lymphoma diagnosis, something Sarah wants to change by raising awareness of lymphoma and getting more people to know and understand signs and symptoms.
“I am a disability support worker part time; this is my LOVE job or as my husband calls me “Lady-lunch a lot”
I went to my GP over a period of 12 months with symptoms of swollen glands in neck and groin (left groin had a growing lump), severe bruising for tiny bumps, swollen tummy (looked 9 months pregnant), weight gain and insanely itchy skin.
I was also experiencing acid reflux, I had low blood platelets and generally felt exhausted all the time. The doctor dismissed each symptom and left me frustrated.
I ended up changing my GP after my favourite client of 3 years watched my demise and took me to hers. She unexpectedly died 6 weeks after my diagnosis and was ironically buried on September 15 World Lymphoma Awareness Day…. I was shattered.
After initial blood tests I was referred to a haematologist at Newcastle Private. Then I endured 6 weeks of blood tests, a mammogram (sister has breast cancer), ultra sounds on armpits and groin and biopsies then a final PET scan.
All my cancer cells lit up like a Christmas tree…MANTLE CELL LYMPHOMA Diagnosed.
No cure to date but treatable.
Due to my protein markers being 40% it was straight into chemotherapy the next week for 6 rounds of Retuximab and Bendamustine over 6 months.
I underwent a stem cell harvest after round 2 which involved cyclophosphamide chemo in preparation for an Autologous Stem cell transplant at the end of chemo.
It has been extremely hard having the roles reversed of being a support worker to actually needing support myself. Having to take so much time off work was mentally challenging in itself. I needed a distraction and a goal apart from getting better.
My dear friend Dani owns Bakers Delight Warners Bay and she proposed a fundraiser for September Lymphoma Awareness Month and I jumped for joy, just what the doctor ordered!!
We set a $10k target and have smashed this by unbelievable support and little green buns. I rallied from home and Dani and her team did the hard yards at the shop. What a champion friend!!
During my journey, I’ve relished in the Lymphoma Down Under Facebook page and had a laugh, a cry and gained so much insight and new friends, MY NEW CELL MATES.
I watched the Lymphoma webinars to gain much needed knowledge and enjoyed receiving sample packs to get me through side effects and hospital visits. The hand written well wishes with this delivery was heart warming to say the least.
Importantly, I’ve learnt no question is too dumb – ring the Lymphoma support line if you have ANY question (hint they don’t know the lotto numbers in advance). They are so happy to answer anything.
On a final note, just last month I won a cruise to the South Pacific on a Royal Caribbean ship from watching channel 7 SUNRISE…. this has been slipped into the slot between chemo finishing and the stem cell transplant with the blessing of my haematologist and transplant coordinator. (Yes extra Covid protection being jabbed before I go) SOMETHING TO LOOK FORWARD TO.
Everyone going through this journey did not buy this ticket to ride the roller coaster but here we all are….on the ride for our life.
We can let it consume us or we can embrace it and make it a mission to make something out of it…I choose the latter.
My motto going forward is “CHOOSE LIFE”.
My sincere regards, health and happiness to you all.
– Sarah
