Leading up to diagnosis

*Disclaimer: Throughout this journey, I have only had one of the classical lymphoma symptoms which has been fatigue. I have not experienced unexplained weight loss, fever, itchy skin, lumps and night sweats. My symptoms have not all been typical of lymphoma and were mistaken for iron deficiency as well as having no lumps either, it was harder to pick up. I am writing this post to show how lymphoma can present itself, how it needs to be pushed with GPs/Hospitals and to create awareness too.*

So where did my journey begin? 

It has been a long one for sure! I have been struggling with a number of different symptoms over the past few years. The worst one would be fatigue. From 2016 and being 21/22 years old, I struggled with fatigue and would be beyond tired after an 8 hour day at work. People would comment and say ‘imagine when you have kids’, ‘you don’t know what tiredness is’ etc and it is very difficult to explain how tired you actually are and that it actually affects your day to day life, I feel like I have been unplugged. Throughout the year, I have accumulated symptoms every month and none seem to be linked to each other. 

My other symptoms include:

- Seborrheic dermatitis

- Recurring UTI’s and infection

- Hyper Sensitivity

- Iron Deficiency

- Vitamin D Deficiency

- Alopecia

- Pneumonia

- Candidiasis

- Back pain

- Chest pain 

I had numerous rounds of bloods, which would highlight my iron deficiency however my auto immune, antibodies, tissue would come back normal although my inflammatory markers were higher than normal. You would never of thought it was Larry.  My doctors however would send me home and repeat bloods and ultimately say I was ‘fine’. My mum who is a nurse was exhausting all avenues and like me knew there was something wrong and I can imagine how difficult it must be for somebody who doesn’t have family with a medical background to get anywhere.  

On 1st May, I had to take the day off work as my chest and back pain was so severe that I couldn’t eat or sleep and barely breathe. I went to my GP the next day to see what he thought it was and he was the worst GP (Locum) I have ever seen, he was awful. Ultimately he tried to say i had depression/anxiety/stress and said all my symptoms and this pain was inclusive of those things. My mum put her foot down and said I am not okay (a mother knows her daughter). Further bloods were ordered including my D-Dimer which was raised and caused me to go to hospital. Please if you do not feel right and feel unwell, do not stop going to the doctors or think it is in your head, push and push and see other doctors if you can. I was lucky that my mum was so persistent with the doctors and stood her ground, not once did they mention lymphoma. If you feel you have some of my symptoms and are worried, please message me and I will try and help best I can, I do not want someone else to go through the same fight I had to go through as this has easily been going on for a year! I aim to try raise awareness through my fundraising and blog to not only for you and me but for medical professionals who potentially don't know the symptoms. 

Once admitted to Blackpool Victoria Hospital, I had a chest X-Ray which showed shadowing in my lungs, it took BVH over 3 weeks to organise a CT scan to show enlarged lymph nodes.  After my CT scan, I had an appointment with a specialist who informed me it could be a nasty infection, sarcoidosis or cancer, that was the first mention of the dreaded c word. BVH wanted me to then have a biopsy however the next available biopsy was on 3^rdJuly, a month later  and would be an E-BUS however that wouldn’t of got the samples that would fully diagnose me. Fortunately for me, I was able to go privately to speed the process along and saw another specialist at Spire & BMI where my consultant said it was 90% chance of being lymphoma. I went to BMI Alexandra where I had a biopsy under anaesthetic which was not a bad experience at all, “a magical journey” was what I said when I woke up groggy as! The biopsy samples were sent off to Wythenshawe and Leeds to be tested which came back with Hodgkins Lymphoma Nodular Sclerosing. 

This journey has been long and a rollercoaster of emotions.  I have had to take time off work for illness and appointments and I have regularly come to dead ends with doctors because they did not believe there was something worse happening. I am relieved to finally have a diagnosis even though it is Larry however it has not been an easy journey. If anyone has any further questions about anything I have mentioned, please do. 

Thank you for reading,

Laura x