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Non-Hodgkin’s Lymphoma survivor tells her 10 years long journey

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Sarah - Non Hodkin's Lymphoma Survivor
“Life is not about how you die but how you live.” I have it tattooed on my back 🙂

Sarah was diagnosed with non-Hodgkin’s Lymphoma but this time cancer messed up with the bad girl. She punched cancer on the nose and told it that she is the only boss of her life.

The Diagnosis

“I was first diagnosed at 19 with B-cell Non-Hodgkin’s Lymphoma, relapsed at 22 with Non-Hodgkin’s Lymphoma and relapsed at 24 with Hodgkin’s Lymphoma.”

The Journey

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“My cancer journey has been going for almost 10 years, but I will try to keep this short and sweet! I was first diagnosed in 2009 at 19yrs old with Large Diffuse B-Cell Non-Hodgkin’s Lymphoma (isn’t that a mouthful!) which presented as a large mediastinal mass right behind my breast bone. I was a student nurse at the time training to be a mental health nurse at Queens.

My symptoms were extreme fatigue, dry skin and chest pain which progressively got worse- I was also a student who partied a lot so brushed it off for a while. After a trip to my GP who sent me to A&E for a chest X-ray I was kept in. 3 days later after getting a CT scan my doctor told me I had a mass which they thought was lymphoma. I had 15 biopsies of the tumor actually and they confirmed it was Non-Hodgkin’s Lymphoma. From I went into hospital until I started chemotherapy was 3 weeks. I had 6 cycles of R-CHOP chemotherapy (3 months).

This put me in remission and I returned to nursing and completed 8 months of 2nd year. In April 2012 I had a stitch in my shoulder that wouldn’t go away and became quite painful. I had had this pain on and off since August time- I had had a miscarriage and that was the first time I got the stitch. On the day it wouldn’t go away I called up to A&E to get a checkup.

They did an X-ray which showed another mass, this time in front of my right lung directly behind my breast. I was admitted again and biopsies completed to confirm it was Non-Hodgkin’s Lymphoma again. I was started on 4 cycles of ESHAP chemotherapy as an inpatient, my stem cells where harvested and I received an autologous stem cell transplant which kept me in hospital for 6 weeks, followed by 4 weeks of radiotherapy. (treatment was 8ish months) This kept me in remission for less than a year.

In May 2013 I had started getting PET scans to see if I was in remission. Lymph nodes where showing on my PET scan in my neck, groin and tonsils although they were very small and I had recently got a big tattoo on my back and the shingles that my doctor said could have caused the lymph nodes showing. We waited a few weeks to scan me again, but my lymph nodes and tonsils where still showing up on the next scan, so they decided to remove my tonsils to test as they were easiest to get to.

My tonsils came back clear off cancer, which was great and we thought I was in remission. A few weeks after getting my tonsils out I felt a lump at the base of my neck at the front, it was quite large and you could see it when I turned my head. I didn’t even call the hospital I just went straight up to bridge water and asked to see a doctor. They referred me straight to ENT as urgent. I had another operation to remove the lump in my neck which turned out to be another relapse, but to make it more interesting it had returned as Hodgkin’s Lymphoma- a different form of cancer.

My doctor told me my only hope for a cure was another Stem cell Transplant, this time a donor one, which would be in Dublin. My doctor applied for funding for a new drug called Brentuximab which I started in Jan 2014 which appeared to be keeping my cancer at bay until I could get the stem cell transplant. I had a PET scan in May 2014 which showed my original tumor was active again and my doctors felt the brentuximab was no longer working and I needed a different chemotherapy regime.

I was started on GEMCIS chemotherapy and only tolerated 2 rounds of it. I was down in Dublin seeing my consultant and they did another PET scan. This scan showed progression of the tumor and I was told there wasn’t many options. I came back up to Belfast and was admitted later that evening for neutropenia. While I was being treated for a few days as inpatient the doctors discussed my case at MDT meeting.

My doctors explained going into a Allogeneic Stem cell Transplant with active cancer was not ideal or recommended and extremely high risk but it was about my only option. At this stage I asked my doctor how long I would have if I did not do the transplant and I was told 6months- 1 year. I had weighed up my options and at this point I had decided I did not want to do anymore treatment and had begun to gently tell family and friends my decision.

A consultant from the Royal decided to operate on me and remove the tumor to see which cancer it was. They operated and removed it and it came back clear- there was no active cancer. My doctors couldn’t explain why my original tumor that had showed as active and progressed on the PET was in fact inactive- we decided it was a miracle!

I was then ready to go down to Dublin for my Allogenic Stem cell Transplant which I had in Nov 2014 I received a week of chemotherapy and then was transplanted with my lovely new stem cells which came from a man in Germany. I was in hospital for 3 months in Dublin. When I finally got back to Belfast in 2015 I was in the city for another 2 months due to viruses etc.

The year after my transplant was hard, there was lots of hospital visits, appointments and stays. I had 7-8 viruses a few of which were hard to control and kept reactivating. I received different treatments such as immunotherapy to help with this.

So that’s my story 🙂 and the last few years I have spent piecing my life back together, getting used to life after cancer and now my passion is to help others on their journey!”

Motivation to fight cancer

“My mum had breast cancer 2 years before I was diagnosed. I took on her positive attitude and resilience that she had during her cancer experience. If she could beat it so could I. I had so much to live for and so much I still wanted to do with my life. Yes, I had shit days but the dominating attitude I held was this Fu*ker will not beat me! Either I killed it or it killed me.”

The biggest hindrance

“That cancer didn’t get the hint and the Fu*ker kept on coming back when it wasn’t wanted!!”

Message to other fighters

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“This may sound odd but embrace the journey. It’s one hell of a rollercoaster, there will be good days, bad days, horrendous days and days you want it all to be over. But you will find an inner strength you never knew existed. Every day remember to find something you are grateful for, remember that it won’t last forever and remember that every day holds the possibility of a miracle.

You are in control more than you think. Take your power back, work on your mindset. The state of mind you are in can be your biggest obstacle or greatest asset. 90% of the battle is getting yourself in the right state of mind!”

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