There were exactly eight days between my surgery and the day i received my diagnosis, eight days which felt like eighty.
As a doctor during the five years i have been working i don’t think i had ever stopped to think about how patients feel after having a test, that waiting period between having a test and receiving the result.. To be honest i was a fit and healthy individual so had never been in such a position myself.. How strange it is that what i am going through now is really opening my eyes to what my patients are going through.. I am no longer the doctor.. I am now the patient.. If i am still alive at the end of my journey the one thing i hope to gain is to be a better doctor, one who has been a patient and one who understands all the frustrations that come along with being unwell…
There were a few days left till i see my haematologist for the result of my biopsy, i was in bed watching ‘Prison break’ on Netflix when my phone rang. It was a call from one of my close friends, a sister id grown up with and someone who had recently become family. She had heard from her mother that i was unwell and she had called to ask if all was well. She was a mixture of worried, sad and upset – not upset because i hadnt told her, but upset because someone close to her was unwell. I felt guilty my close friend did not find out through me, at the same time i felt it was not right to worry more people when i was yet to receive a formal diagnosis. What if this was all nothing? What if it was? How many more people would i be burdening with my health troubles..
Those who know me know i have a younger sister.. My baby.. The soft spot in my heart.. One of the hardest parts of my journey so far is hiding this all away from her as she has exams.. I don’t know how the news will be broken to her eventually.. I just wish she deals with it well.. Its difficult knowing the distress i am causing to those i love..
I have always been a organised person, properly a bit obsessive at times.. As i had this ongoing gut instinct that i was seriously unwell i decided to create a medical folder for myself (which my elder sister kindly made!) i filed in it all my appointments and results so far.. I had a feeling this folder would stay with me for a while…
(Yeah its pretty OTT.. Why not have a bit of fun.. Life is too short.. I would know that..)
The day i would receive my diagnosis finally approached..
I had struggled to sleep the night before.. I had tossed and turned in my bed many times.. Cried at times and prayed at others.. That fear of waiting to hear serious news is undescribable..
That morning i got up had a quick shower and got dressed, my fiance was joining us for breakfast at home.. My exam result was due to be released that same morning.. I made the decision to check my result before leaving for my appointment.. The day was going to be full of results and delaying the inevitable wouldnt be wise.. So.. I opened my laptop, being old fashioned Sony VAIO it took its time to load, i logged into the website and waited for the page to load.. And there it was.. A big fat PASS!!!!! I felt a glimpse of happiness return to me.. It was going to be a good day..
The doorbell rang.. It was my fiance.. I ran down and gave him a big bear hug and told him id passed and i hadnt lost my marbles yet! He reassured me that all would be well and he would be by me always.
The rest of that morning the atmosphere at home was a mixture of unease and unspoken worry.. It was time to leave for my appointment.. I made sure i took my folder with me which i held tight to my chest like it was some form of protective shield..
Walking into the outpatients department with my mum, sister and fiance i felt like a air hostess.. Pointing to them the different clinics and what goes on.. This was a hospital id worked in for 2 years.. And i had sat behind those clinic doors seeing patients myself.
I had my weight, blood pressure and heart rate checked.. The usual checks they do before a clinic appointment.. My heart rate remained above 120.. Yep it was fast and had been for the last few weeks a reflection that my body was not happy (i have had a heart scan which was all good). My weight was 55.4kg!!! Now im not shy to discuss my weight but normally i struggle to get beyond 51kg.. So i was gaining weight.. you usually loose weight when you have cancer.. So maybe this was a good sign? Before i could quietly celebrate in my mind my thoughts were crushed by the healthcare assisstant who told me i needed to be seen by a specific consultant.. There were 5 working that day.. What did this mean?
Shortly after the consultant i was assigned to came out and called my name.. We followed him into his room and we all sat down.. He introduced himself and he told me he knew i was a doctor and he had been through my notes but wanted me to repeat my story and so i did.. He asked me a few questions and then turned to look at his computer.. He then turned back and looked at me..
“The results of your biopsy have shown you have hodgkins lymphoma”
It felt like time had frozen and those words were being echoed again and again.. I smiled nervously and looked around at my family, my sister smiled back as if to say ‘its okay’, my mum and fiance were stone faced.. Total shock on their faces.. I turned around looked at my consultant and said “i knew it, i knew it, had you told me otherwise i wouldn’t have believed you”.
My consultant went on to describe what hodgkins lymphoma was (a form of blood cancer which i will separately write about in my blog), he then went on to talk about the ‘staging’ the degree of cancer spread.
I was told that my staging is currently 2B and it may be more, my cancer may have spread further and the only way they would know woud be after doing a further scan known as a PET scan. He also described my disease as “unfavourable Hodgkins lymphoma, with bulky mediastinal disease”, this basically means my blood tests were pointing in the wrong direction and i have large swollen lymp nodes in my chest – measuring 4-5cm.
There was a lot of information to take in.. Its not easy to process in one go.. But what hit home the most was when i was told i would need to start chemotherapy soon.. Soon as in 2 weeks from now.. They were treating me as advanced stage lymphoma and therefore i needed minimum 6 cycles of chemotherapy – thats 6 months of treatment at least!
Having chemotherapy as treatment doesnt sound too bad.. Well not until you hear of all the possible side effects.. I have always been familiar of them.. But never associated them with myself.. Hair loss, infertility, risk of secondary cancers, heart damage, lung damage and many more… Not my cup of tea..
I was due to get married in less than a year.. Being bald was not the look i was aiming for on my wedding day.. Even writing about this makes my eyes swell up and my heart sink.. Those who know me know well how i love long hair.. I think ill stop there for now
Infertility.. Infertility in my 20s before iv had a family.. Infertility.. Taking a womans womanhood thats how i see it.. Comitting me to execution before i have been judged.. Forcing me to face a reality i did not choose! I am young, i have a partner and i am having my chance of bringing a child into this world taken away from me! Yes i’m angry.. At who i dont know.. But what makes matters worse is that i cant have my eggs frozen because i have been told i am too unwell to go through any procedures and my chemotherapy can not be delayed.. Is this bad luck? Is this fate? This is not what i would have chosen for myself! My consultant said they could offer me a monthly hormonal injection to help preserve some of my fertility.. But that wouldnt guarantee my fertility would be safe..
So now what?
Here i am.. A cancer patient
But i am who i am.. I am not lymphoma.. I am not cancer.. My lymphoma is a small part of who i am.. A unwanted visitor in my body who i will be kicking out soon.. I may loose my hair, my fertility, my job, my mental well being.. But i will get my body back..
The fight begins..
I am now waiting to have
1) Lung function tests – as chemotherapy can damage my lungs so they need to know a baseline of how my lungs are doing before treatment
2) A PET scan.. A special scan which highlights where the cancer has spread to so the staging of my disease can be confirmed and my treatment plan tailored accordingly
3) An appointment with the fertility specialists.. I guess to hear all over again that im too sick to have my eggs frozen..
4) My chemotherapy.. treatment will be starting soon.. 2 weeks from now…
How did my family take this all in? Not too well.. Especially my other half.. He lost his temper when talking to the consultant asking him several times if he was sure about the diagnosis.. Iv never seen him so stressed and upset.. But ultimately he is my rock and behind his teary eyes he tries to help me stay positive..
The only way now is forward..