Good days and bad days

I cannot begin to describe my struggle.. Unless you have experienced this illness you won’t be able to understand how distressing my symptoms are..

My main symptoms are fever, night sweats and itching (pruritis). In a previous post ‘My story’ i mentioned i have ‘B symptoms’, these are symptoms which occur in some people who have lymphoma, it refers to weight loss, nights sweats and fevers. I have 2 out of the 3 B symptoms. Unfortunately B symptoms are associated with a worse prognosis.

I have what i call ‘good days’ and ‘bad days’. The good days are when my symptoms are manageable and i am able to function to a reasonable extent. On a good day i may even be able to go out for a few hours, im more cheerful and positive – the old me.

Today is what i describe as a ‘bad day’, i am bed ridden with limited energy. My symptoms can be so distressing that it leaves me broken and i am close to loosing all will power. 

Where shall i begin and how can i explain to anyone what i am feeling. My fever is by far the most awful symptom i have, it is like no fever i have experienced before. I feel my skin is being roasted on a barbecue, the burning stinging sensation of heat radiating from my skin leaves me worn out. I take paracetamol regularly, i use ice packs, a fan and drink cool fluids – none of which help. I wear minimal clothing made of 100% cotton and take regular cool showers – any attempt to bring my temperature down. I have reached a point where the only temporary relief i can get is by pressing my bare body against my cold bathroom tiles.. It is unbearable.. I would not wish this upon anyone.

Along with my fevers come my night sweats.. Or shall i say my any time any day sweats.. The sweating people get from a workout in the gym i can get just for existing.. Dont get me wrong i am not saying i am dripping with sweat every minute of every day, but there are days when i have to keep wiping my sweat away. It can be humiliating going out and always having to be conscious checking to see that whether i have left a damp sweat patch behind me when i get up from a sitting position.. Yes it is true, i have no reason or need to exaggerate.. When i went to the hairdresser to get my hair chopped off i was sat in a leather chair, when i got up my clothing felt damp but to my relief i had left no mark behind. At night i can be drenched in my night sweats this can easily wake me up resulting in a disturbed sleep pattern. It is not fun waking up to find your clothes and bedsheet wet from the sweating, it makes me feel dirty and fed up, its just so exhausting.

Some days my predominant symptom is itching.. Intense itching which leaves me wanting to rip my skin apart.. I have tried all kinds of tablets to help control my itching but my body seems resistant.. I try to moisturise my skin and yes i have tried all kinds of creams, lotions, you name it.. Wearing tight clothes makes my itching so much worse that i now wear 2 sizes bigger than my usual size. I can no longer wear materials other than cotton, and if i do wear another material then beneath it i will wear a cotton layer.

When all three symptoms occur together i feel so sick that i forget about loosing my hair, being infertile and having no life.. 

Now all i want is treatment.. I am desperate to start my chemotherapy.. I know it will leave me feeling unwell, but my symptoms are a constant reminder that my cancer is active.. I feel helpless.. I need treatment.
My symptoms are getting worse each day and now have become more frequent.. I need help..

Fan, paracetamol and ice pack.. Trying to stay cool

The short cut

Yesterday i cut my hair.. Short.. A bob to be more specific..

A brave decision.. But one i had no choice but to take..

The last time i had short hair was when i was a baby.. 

I love long hair.. We have a saying in arabic that a womans hair is the crown of her beauty. I have never cut my hair short, i always grew it long and loved its length, if it wasn’t for my mum screaming down my ears to always trim it i would never let scissors go near my hair.

I love hair.. So much so that i have never died my hair out of fear that my hair may get damaged.. After showering i only towel dry my hair to avoid exposing it to too much heat from a hair dryer.. I only use heated products/go to the salon on special occassions.. So you can see.. I have always looked after my hair.. But now i will loose it all..

I decided to loose my long locks as psychologically it would be more easy to cope with the transition from long hair to short hair to no hair.

One of my dear friends took me to Toni and Guy where i met a lovely stylist called Nora, i told her my story.. Her eyes became teary and like a baby i cried as i ran my hands through my long hair.. I asked her to do what she wanted with my hair but i wanted it short.. I had nothing in mind.. I dont like short hair and i was not cutting my hair out of choice… So Nora cut my hair into a cute bob.. I feel naked.. I miss my long hair.. I am trying to stay positve.. I keep reminding myself that it will grow back.. One day it will..

I took some of my chopped off hair home with me.. Does it give me any comfort? Not really.. But its a reminder of what was and what will be.. My hair will grow back.. (She says as she wipes away her tears)

So cancer.. I am still on my feet.. U have cost me my long locks.. But they will grow back..

The big ‘C’

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
Yep..
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..

How my story began

It was the last week of February 2016, I was working day shifts in obstetrics and gynaecology, a busy job but rewarding in many ways. Working as a doctor in hospital means being in contact with sick patients, and therefore catching a cold off a patient isnt too surprising.

I remember very well that week i attended to a young pregnant teenager who had presented to the emergency department. Without delving into the details of her complaint i noted she had a cough and a slight fever. Two days after i began to develop a cough, sore throat, runny nose and a fever. I was convinced i had picked this off my patient and didnt think more of it. Over the next few days i noted that i was feeling much more exhausted than usual and i was struggling to bring my fever down, my colleagues at work sent me home on 3 occasions as i was too unwell to stay. It took a week and a half before my symptoms began to improve, I was back at work and that was that.

As the days passed i began to notice i was getting more and more tired, i was needing to eat more to keep me going especially as my job was busy and kept me on my feet. I began to notice night sweats which were leaving my clothes and bed sheets drenched in sweat, at times i was needing to change my clothes several times a night. I also started to notice a itch all over my body which was made worse by wearing certain materials and tight clothing. I began to wear clothes two sizes bigger which meant they were loose enough to give my skin some breathing space.

I had a flight on the 23rd of March 2016, i was heading to Kuwait see my fiance to surprise him on his birthday. I was in Heathrow airport terminal 5 waiting for my flight when my itch became quite intense, I remember panicking and thinking how would i cope on the flight. I headed to boots where i brought over the counter medication and a cream to help soothe itching.

I had a great holiday in Kuwait, my symptoms did not cause me too much distress and i forgot about them. I returned to London and was back at work.

My symptoms began to cause me more distress day by day. I has scratch marks all over my body and was needing to change my clothes more regularly due to the sweats. I decided i needed to see my doctor and ignoring my symptoms was no longer wise. However i had an important exam coming up in three weeks and therefore i scheduled the appointment so that it would be after my exam.

I was working a night shift and was due to see my doctor the following day. During my shift i had a fever and was constantly sweating, i had to go to the toilet repeatedly and wipe the sweat off my body. I spoke to one of my colleagues the medical registrar working that night, I explained my symptoms and asked him if he would suggest i do anything before seeing my appointment. He seemed concerned and arranged for me to have some tests urgently. I was adamant to finish my shift, being the stubborn person i am so i did.

Following my night shift, the morning of the 29th April 2016 i had some tests done – the convenience of working in a hospital! All along i was convinced i had some sort of viral illness, whilst waiting for my test results i was pretty sleepy and desperate to go home as i had been up all night.

One of the tests i had was an xray of my chest, I remember the radiographer who carried out the xray repeatedly asking me if i was due to see a doctor and when i would. Something in her voice was suspicious and at that point i knew something had shown up on my xray. What first came to my mind was that this may be a pneumonia and that would explain some of my symptoms, i was not expecting to hear what was to come.

I was pacing up and down the ‘ambulatory care department’ where i was being seen waiting to get my results. Finally one of the doctors who specialises in respiratory medicine (lung disease) came to see me. He was absolutely excellent, he listened patiently to everything i had to say and he examined me top to toe. Before he could tell me the results of my tests i looked him in the eye and said “this is just an infection isnt it?”, he paused and looked at me and said “i think there is more going on than just an infection”, he went on to explain how my chest xray showed some lesions which looked like swollen lymph nodes. I smiled and laughed nervously saying “you are joking?”, he explained to me that he was concerned this may be one of three diseases; TB, sarcoidosis (a condition affecting lung) or lymphoma (a form of blood cancer) and that i needed a urgent CT scan of my body. I froze at that point and something in me knew what was wrong…

I picked up my phone and dialled my mums number, i told her id be home late, i was having some tests at work and she didnt need to be worried. I had my CT scan within half an hour of seeing the doctor. As i walked into the scan room i felt quite overwhelmed and disorientated. I had worked in this hospital for 2 years and many times i had brought patients into this scan room and watched behind the screen as they went through the doughnut shaped ring of the CT scan. I was now the patient, a role i wasnt good at playing, simple tasks such as removing my jewellery which i would instruct my patients to do i was forgetting myself. As my body was going through the CT scan i could feel the warm sensation of the contrast (dye) they had injected into my vein, it gave me a strange sensation of wanting to empty my bladder. The thoughts in my mind were racing, i was switching between patient mode whereby i was anxious thinking of what this scan may reveal and the doctor mode of thinking how scans are interpreted.

As i walked out of the scan department i bumped into my aunt (dads sister) she happened to have an appointment at the hospital. I briefly said hello and mentioned that i was just having some tests but all is well. As i continued to walk down the corridor i saw one of my colleagues, a doctor working in the same department as me. He had known id been unwell recently and asked me how things were going. At that point i broke down in tears.. Yes in the middle of the main hospital corridor. I explained to him between wiping my tears and nose all that had happened and that i knew this was something serious. He walked with me back to the department and we spent some time talking about how to deal with whatever the result may be.

A couple of hours later i was seen by one of the consultants who was oncall. At this point i had contacted my fiance who lives in Kuwait and had explained to him that i was in hospital having some tests and that id let him know when i have more information. As the consultant walked into my cubicle i got up from the bed i was laying in, quickly fixed myself as i knew i looked scruffy after a long night shift and hours in hospital. He introduced himself and seemed quite serious yet very understanding and empathetic. He went through my results and explained that he had seen my scan however it hadn’t been formally reported. He  told me i needed some more tests to rule out TB (Tuberculosis – a infection) and a biopsy (sample from one of the lesions) to rule out lymphoma. I was advised i could now go home and they would contact me once my scan was reported and give me more details.

I walked out of the hospital holding back my tears.. I knew i had more than an infection.. I knew i was ill.. I just hadnt listened to my body.

As i stood outside the hospital i contacted one of my colleagues who does our work rota, i wanted to give him the heads up that i have upcoming tests and may need time off. He insisted on meeting me as i didnt sound right and so we met in one of the doctors offices, one of our senior colleagues also joined us. I told them everything, there was something comforting about speaking to them as they were doctors like me, they understood the medical jargon that came out of my mouth. My colleagues were more than just colleagues, they showed me so much love and support and i knew whatever my scan showed I was never going to be alone. 

On my way home i called my older sister, who in actual fact is one of my best friends, i struggled to hold back my tears as I explained the doctors were suspecting i may have lymphoma and that i knew thats what my results will show. I was an emotional wreck.. 

Later that day I received a phone call whilst at home from the hospital, the doctor told me my scan had shown lymphadenopathy (swollen lymph glands) in my chest, breats and under my armpit possibly suggestive of lymphoma. As there was nothing inside my lung the chances of this being TB or sarcoidosis was less likely. This didnt surprise me but confirmed what my gut instinct was telling me. I was told that i had a urgent appointment arranged to see a haematologist (blood specialist) and that i had to attend the next day for more tests.

I am fortunate enough to have the best fiance who is more than my other half, he is my soul mate my bestfriend. My fiance flew in to London as soon as he heard about my CT scan result. Having the support of those you love is paramount during difficult times. I am thankful that my family and loved ones have been by my side. I remeber waking up one night and crying, the fear of being ill and the baggage that comes with it scared me. I decided to message one of my close friends a loyal lawyer who has stood by me for years, i felt i needed to reach out and ask for help, someone outside my family and work circle. I said a few prayers that night, put my head on the pillow and tried to sleep. The next morning my friend called me in utter shock, she asked to meet me and so we met for coffee. We spoke for a long time, i expressed my fears, i hadnt realised how much talking and sharing your feelings could be therapeutic, i felt i gained a boost of confidence that day.

You may question why as a doctor I had ignored my symptoms for weeks. Being a doctor can be a two edged sword, i never listened to my body, I could always find an explanation to why I wasn’t feeling great. I had convinced myself that i was a young healthy active person and my symptoms would just go away. Many times i sit down and think if a patient presented to me with the symptoms that I was experiencing how differently i would have acted.. Sometimes its best not to look back and to just keep moving forward.. I try my best not to feel guilty and blame myself.

I attended my first haematology appointment with my mum, my fiance and one of my friends who also happens to be a doctor working with me. The haematologist who i saw was great, she was very thorough asking many questions and listening to my every concern. She explained to me that there is a big possibility i have lymphoma but there are over 40 types and the only way they could be sure of the diagnosis is by removing one of my lymph nodes. This would need to be done urgently by one of the breast surgeons and i would need a general anaesthetic. I told her i knew my biopsy would confirm lymphoma as i had classic “B symptoms” (i will talk about this in a future post), i explained to her my biggest anxiety is not being able to work as my work is my happiness. My consultant advised me that work was not an option at present and that i need to learn to ‘listen to my body’, she may have given me a pep talk but her words and advice resonated, her words were the inspiration for my blogs name.. I had never listened to my body and now was the time to start listening.

Having worked in the breast surgery department last year i knew the team who would be operating on me. My surgeon was one of the best doctors i had ever met and therefore i was in safe hands, i had no concerns about my surgery. 

The day of my surgery came by quickly, my mum, fiance, sister, aunt and cousin and her baby where with me.. Yes i had a full entourage much to the horror of the staff at the hospital.. My surgeon suggested we sit in the coffee shop and i would be contacted when its my turn to go into the operating theatre. So me and my gang went along and took our loud voices half arabic half english conversations with us. After 3 hours of waiting i got a call on my mobile telling me the surgeon was ready for me, so i said quick goodbyes to my family and i followed the theatre nurse. 

Many times had i entered theatres wearing my scrubs with my bleep and mobile in my pocket, hoping that the surgery would be uncomplicated, and the scrub nurse working in the theatre would be a nice one. This time i was opening the theatre doors and entering as a patient, dressed up in my hospital gown with only a surgical cap on my head. I must say i was not your usual patient, i mean i walked myself into the the operating theatre and popped myself onto the operating bed, usual protocol is  for patients to be rolled in a bed, but i didnt need that, my legs were functioning pretty well. The anaesthetist and scrub nurse introduced themselves, they had figured out i was a doctor – i mean lets not forget a year ago i was standing by their side assisting in similar operations. My operation was for the removal of a 3.5cm lymph node from my left axilla (below my left armpit) – a procedure known as ‘surgical excision biopsy’.

As i lay on the operating bed i looked up at the ceiling said a few prayers as the anaesthetist gave me a injection to put me to sleep. The next thing  remember is waking up in the recovery unit, the sensation of waking up from a general anaesthetic is strange and difficult one to describe, it almost felt like swimming out of deep water (not that i can swim.. so maybe a innaccurate comparison!). As soon as i was awake enough i asked to see my family, i was in no pain or distress but craved my fiances warm hand squeezing mine to say ‘it will be okay’ and my mums warm hearted love. I thankfully recovered well from the operation, i cant thank my surgeon enough for the job he did.

So my biopsy was taken.. the result of which i would recieve in a week and my life would change forever…

The next part of my journey will follow in coming posts.. Stay tuned xxx

The start of a new journey

I am a doctor training to be a general practionner. I am a wife, a daughter, a sister, an aunt and a friend.

Today i was told i have Hodgkins Lymphoma, a form of blood cancer.. My life will never be the same again..

I decided to start this blog the day i was diagnosed, with the aim of taking you on my journey step by step.. No sugar coating.. A real life story of someone fighting cancer..

This is my story and my journey…