Author: listentoyourbody

I am a doctor training to be a general practitioner. In April 2016 I was diagnosed with Hodgkin's lymphoma - a form of blood cancer. I started this blog the day I received my diagnosis to share my story and battle with the medical condition everyone fears. My blog gives a unique and honest insight into the roll reversal of doctor to patient whilst sharing my personal struggles during this journey.

“Cancer changes people.. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately”

A random quote I came across on google.. typical of when your bored and google everything including how to fix the unbroken kitchen sink. What really caught me in that quote is “hopes more desperately”.. and that is where i have found myself time and time again.. when you are so desperate you can easily go off character.. to others you are irrational… but to yourself your simply fighting for hope.. ill explain more…

Since my last post i have had two more chemo sessions and a further scan.. it has been a bit more long winded than wanted..

After my initial scan the plan was to go ahead with a stem cell transplant, but i was in disagreement with my doctors about what type of transplant to have (whether to use my own stem cells or use that of a donor).

Before anything could be set in stone i unfortunately began to break out in a itchy rash.. identical to the one i had previously when my cancer had come back. I was told i would need a repeat scan before a final decision can be made on my transplant. It was this flare up that pushed me into mentally spiralling out of control and finding myself in a whirlpool of distrust in conventional treatments..

The days leading up to my repeat scan result were very intense and difficult.. probably the most stressful time i have experienced.. more so than any time before.. i can imagine some people are thinking “if you have enough faith you shouldn’t be anxious or stressed”.. but it isn’t as simple as that.. however strong your faith is, however many prayers you read and however many people you have behind you.. there is always that simple human instinct for survival… an instinct which is driven by fear and desperation.. resulting in a concoction of stress and anxiety…

Its this desperation which at times pushed me out of my comfort zone, away from my firm medical beliefs and left me seriously considering alternative medicinal options including the use of cannabinoids and travelling abroad to seek the help of a healer.. i will delve deeper into this controversial topic in a separate post. Thankfully i didn’t need to follow through with any of these alternative options… all thanks to God.. God is love.. God can make any difficult situation seem so much more bearable..

After having more chemo my scan was repeated and finally there is now plan in place, i will still go ahead with the stem cell transplant and more importantly I am now in agreement with my doctors.. hallelujah!

I have always written honestly… i’m not one to shy away from being critical when I have had a bad experience. But I have to say the medical team who have been looking after me have been really great. Despite not agreeing with their plan initially, I was given the opportunity to discuss my ideas and concerns and reach a decision after feeling I am fully informed.

I captured the picture below when one of my doctors was explaining the various risks depending on the type of transplant. I have always been convinced that if i was to have a transplant i would use cells from a donor as this would give me a new immune system. However what my doctors tried to explain to me was that using the cells of a donor comes with a death risk of up to 25%.. much higher than the 1% risk of death using my own cells..

The plan going forward is to have a stem cell transplant.. using my own stem cells.. known as an “autologous stem cell transplant”.. i am aware that most readers wont know what that is or what it involves.. i plan to document my transplant journey in depth and explain all this.

Today i am back in hospital.. waiting to have a new chemotherapy drug ‘cyclophosphamide’… this will kick start my stem cell transplant journey which will take two months from start to finish. I will break up the different stages of my transplant journey into separate posts so its clearer.

Please pray for me that today goes well.. i am now strapped to the drips.. and can only hope for the best.

Lots of love and positive energy to everyone xxxx

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Praying for good news

It has been about three weeks since I was last an inpatient in hospital. Every day that passes by with me being at home is an achievement in my eyes. Despite being of a medical background I am not shy to admit that I absolutely fear the idea of having to spend another night in hospital… and will do anything i can to avoid it..

Fear.. a word I now probably use more often than ever before.. you may judge me and say I should have more faith and be more strong.. because those who are don’t fear anything.. but this is it; i have no fear from death, i have no fear from cancer.. I fear being in hospital.. being in a hospital bed.. being tied to a drip.. loosing my autonomy. However i know it is a small price to pay for better health, something I have to just accept and deal with in my own way.

I have now completed my last cycle of chemotherapy.. and yesterday I had a PET scan, the results of which I nervously await.. its just a matter of time now.. a waiting game thats bitter… whatever the outcome of my scan I wont be a free lady.. my scan will show that I either haven’t responded enough to treatment meaning another drug has to be tried.. or my cancer has responded enough for me to move on to the next stage of treatment.. which is having a bone marrow transplant..

This situation is very different to the one i was in last year..because regardless of the outcome i know i am still not at the end of my journey.. having said that i pray and pray my scan shows i have responded enough to have a transplant, as ultimately that is what i desperately need.. even though i fear the idea of being trapped in hospital for weeks (when having the transplant).

I really don’t know what my scan will show.. I don’t have a gut feeling or any inkling.. The main symptom i have at present is night sweats.. really really bad sweats whereby my clothes stick to my body like tape and i have to literally peel my clothes off.. despite the weather being colder now in London i sleep with my fan close by. These night sweats can be because of the cancer or because of the injection i am on (zoladex – which puts me into artificial menopause). I haven’t had night sweats which are this bad for months, and I honestly don’t know which of the two is causing it, or whether it’s a combination of both. I can only stay positive and hope for the best!

Today I came across an article about a doctor (who happens to be GP), her young child was diagnosed with a rare cancer of the kidney, shortly after her daughter was given the all clear, she herself then develops a rare and serious autoimmune condition. In the article she talks about how she felt that even though she is a doctor, she wasn’t treated any differently, and in fact her daughters diagnosis was delayed as her concerns were not fully explored.. and at one point she was called “neurotic”…. You may be wondering why i shared that story.. well its because something about it resonated with me.

There is this misconception that if you are a doctor you automatically get special treatment.. that really isn’t always the case.. I admit when i was a patient in the hospital I worked in most the doctors treated me as a colleague and that was nice.. but i clearly remember how on one occasion, minutes after i was told my scan had shown I hadn’t responded to treatment, i was upset and the nurse who was present when i was given the news told me “your always anxious” in a really patronising way.. she then immediately apologised and tried to reword what she had said. I was too shocked with the news of my scan to reply back.. but i wish i had told her “you try going through what i am going through, then tell me i’m anxious!” In the hospital i am currently being treated in i feel like an outsider.. the annoying GP trainee who can’t keep out of hospital.. everyday a new admission and drama.

As a patient I have observed that no matter how good a medical professional is at their job… or how empathetic they may try to be.. they will never ever fully understand what a patient is going through unless they have had a similar personal experience.. I also have seen how desensitised medical professionals can be.. a patient is just a disease.. a number. I can’t blame them as its human nature… if your repeatedly exposed to something, you will eventually become desensitised to it. I just wish healthcare professionals were more understanding and caring. When i had my latest dose of chemotherapy, i began vomiting before the drug was put up “anticipatory nausea”.. something that has never happened to me before.. but due to my recent bad reaction to a chemotherapy drug, which I ended up in intensive care for, i was understandably very nervous… the nurse who was giving me the chemo told one of my family members that next time I should ask my doctor to give me tablets to “calm me down”.. now what he said does make sense and is common practice, but had he been empathetic and more caring when treating me I wouldn’t have walked away that day feeling upset…

Wow i feel i have moaned a lot today! Despite all the above rants.. i am really happy and truly thankful to God because i am in the comfort of my home and room.. to me this is heaven.. being close to my family.. i have this strange happiness in me.. being at home has really lit a spark.. i know it sounds strange to say this in my circumstances.. but deep in me I am content and at peace.. I feel i am connecting with God in a non traditional way, and that is helping me. I know I am not alone.. whatever news the coming days hold.. i will be prepared to face the next battle.. i’m not ready to give up…

Time for me to sleep.. but before i click that ‘publish’ button.. i wanted to thank everyone who remembers me in their prayer and to everyone who messages me and asks about me.. i have a backlog of messages and i am really sorry for not replying.. some people take the time and effort to write long messages which truly touch me and brighten my day.. if I don’t reply i promise its not because I’m a rude person. I wish i could thank each and every single person individually.

There is one person i have to mention.. Aya Al-Assadi.. I don’t know you in person.. we have never met.. but the letter you posted was one of the most touching letters.. it arrived on a day when I wasn’t feeling great and it uplifted me and had me in tears… thank you so so much and thank you for your beautiful gifts! (I also have a backlog of pictures to post!)

Praying the next time I write a post I will have good news to share..

So much love and positive energy from me to you all.. in a world full of darkness let your smile and love of God light the way xxxx

And.. another hospital admission..

This is just a quick update.. two days ago (Friday) i was discharged from hospital after spending a week in captivity – this time i did time for “neutropenic sepsis”..

So yep thats my fourth hospital in about 2 months.. i was only home for 9 days before i fell ill again.. i am becoming that annoying patient who just keeps coming back with something..

Basically as a side effect of chemotherapy i had a very low white cell count (the cells which fight infection) this is called Neutropenia in medical jargon.. a low white cell count puts you at a high risk of infections.. and i did get a infection which made me unwell..

I fell unwell the day i wrote my last post.. i began developing fevers of above 39.. but being stubborn me i took some paracetamol to bring the temperature down and slept.. however by the next day my temperature was still high and my family managed to drag me back to hospital and i was admitted.. it’s becoming a freaky coincidence that each time i write a post i end up back in hospital so i pray today nothing happens haha..

I spent a week in hospital having antibiotics through a drip.. i am now back home recovering..

A big shout out to my doctors and nurses who haven’t given up on me and my dramas.. sometimes i think “i bet their heart sinks when they hear im back in”..

Also a massive shout out to my sister Maryam who really took such great care of me and was like a mother figure.. thank you for your patience and love.. my better half no words describe you.. thank you for always being my hero.. my beautiful parents.. my sis vian.. all my family and friends.. you know who you are.. thank you..

Coincidentally i was a inpatient on my supposed “wedding day” – 23rd August.. I thought that day would be much more emotional.. it was in some ways.. i won’t lie i did shed a few tears.. but being in hospital put things into perspective.. it makes you realise how much health really is important.. and if i was given a choice between health or a wedding of course i would choose health without a shadow of a doubt.. i just want to get better.. if i ever get to have a wedding one day or not isnt important anymore.. i just want to get better.. i’ve never wanted something so much..

I was lucky to spend that day with my family and amazing friends (Mel and Nats love you).. we had a spiritual evening and did prayers which really uplifted my mood – thank you!

Okay.. so whats next.. my next chemo has been slightly delayed.. giving me more time to recover and a breathing space..

This was meant to be a quick update but I’m really good at waffling.. so ill stop now..

Lots of everlasting love, peace, positive energy, health and happiness to all.. for those on pilgrimage may you have the most uplifting spiritual journey.. thank you to everyone who remembers me in their prayers xxxxx

When it all goes wrong.. my unplanned hospital admission

When it all goes wrong.. my unplanned hospital admission

Two weeks ago – the day i wrote my last post – the day i was due to start my second cycle of chemotherapy… that same day.. within hours of sharing my last post.. i ended up being admitted to hospital.. and somehow even managed to get a return ticket to ITU (intensive care unit)..

Two weeks on I feel I can look back and laugh at what was a far from funny situation.. but I genuinely believe I couldn't attract more drama and unfortunate circumstances if i tried.. I don't know what i'm doing thats wrong.. but i feel i am constantly being pushed to the limit.. if this is a test.. then it's disproportionately difficult and i am not being let off that easily.. in the space of 4 weeks i have had 3 hospital admissions (one in my local hospital and 2 in the hospital im currently receiving my chemo treatment at)..

So that day (3rd of August) i saw my doctor as planned.. and i was given the go ahead to have my planned chemo session.. so along i went to the chemo unit.. all seemed to be going fine.. to begin with.. as the chemo drip was finishing i began to vomit.. a lot.. and then i started feeling cold and shaking.. (note: i have had this chemo drug before and was okay).. the nurses in the chemo unit checked my pulse, blood pressure and temperature.. they said it was all okay.. but i kept shaking.. i was told i could wait a bit before leaving to make sure i was okay, but i said i would rather go and get some rest.. maybe the shakes are because i vomited so much.. my temperature and other observations were fine so I wasn't too concerned..

Luckily that day my parents had booked me a hotel room opposite the hospital.. as the hospital is about a 45min drive from home, they felt it would be too tiring for me.. when i got to my hotel room my shakes (rigors) continued.. my family were very concerned as they felt i was beginning to look more unwell so they kept getting me to check my temperature.. a mums instinct is always right.. my mum kept saying something is not right.. something is very wrong.. and she was right.. my temperature began to creep up.. at this point my family were trying to convince me to go into hospital which i initially refused (as i had recently had two hospital admissions and was fed up).. but as i was beginning to feel more sick i finally allowed them to drag me to the emergency department..

Arriving at the emergency department i had a temperature of 40, a heart rate of 166 and a very very low blood pressure.. i was taken immediately to the resuscitation department.. basically i was very sick.. the sickest i have ever been.. i can not thank the staff in the emergency department enough for what they did.. they are real life heroes and without them I don't know how things would have turned out..

As a doctor i have worked in the emergency department (A&E) before.. i know how things are done.. as a patient i have had multiple hospital admissions.. i have been in the resuscitation department before.. but this time it really was different.. i was much sicker.. it was so much more scary.. the doctor in me is very aware of whats going on around me and whats being said.. what i found most terrifying was when the emergency team put on the "defibrillator pads" (electric shock pads which are used if someones heart stops) as well as the usual monitoring.. and they were talking about making sure all the appropriate drugs were at hand.. now as a doctor what came straight to my mind was "are they worried my heart may stop".. that may not have been the case.. but thats all I could think of..

I was in the resuscitation department for several hours.. initially they thought i had a severe infection so i was given antibiotics and i was given 5 litres of fluid to try and bring my blood pressure up.. but it just wouldn't come up.. i began to develop double vision and was going in and out of consciousness (because of my low blood pressure).. I can't remember everything that happened but bottom line is i ended up being moved to intensive care because of my blood pressure.. overall it was a horrific experience not only for myself but for my parents, other half and sisters who never left my side.. I really have put my family through hell..

Thankfully due to the great care I received I improved and I live to tell the tale (briefly).. the most important part of the tale is.. in the end it turned out I hadn't had a severe infection.. but in actual fact i had had a severe reaction to a chemotherapy drug.. i was given another dose of it whilst under monitoring in hospital to see what will happen… and unfortunately i reacted in the same way.. but as the team were prepared they immediately gave me all the drugs i needed to control the reaction which meant i didn't need a second trip to intensive care!

Unfortunately the above drama means i can no longer have that particular chemotherapy drug (Bendamustine).. I can only have one out the two chemo drugs i need.. and there is no alternative.. it's very disappointing and upsetting because i am not getting the full treatment i need.. it worries me.. i feel everything keeps going wrong.. every single treatment i have had so far has been complicated by one thing or another.. every treatment i have had has needed to be changed or tweaked.. my biggest concern is my type of Hodgkin's Lymphoma is not straight forward, treating it is complicated… any compromise to my treatment plan will hinder my chances of recovery.. but all i can do is just keep praying for a breakthrough..

I have now been home for a week and slowly recovering.. i have become quite reclusive and that is a conscious choice as i just want to be surrounded by my direct family.. this has been a very difficult time for them – probably more than it was for me.. they are much more protective now than ever before and fear i will catch something off someone and end up back in hospital.. whether i agree with that or not I respect their view and I feel I have put them through enough as it is so I can't argue..

What is next? I am seeing my doctor next week and we will see what happens..

This beautiful card and silk rose was given to me by the husband of a lady who was also in intensive care.. he visited me every single day whilst I was in hospital.. there really are so many beautiful souls out there..

Cake and flowers from my sis Maryam and beautiful niece xxxxx

Cute fruit tree from my amazing bro in law!

To my beloved family who are doing everything they can to keep me upright and to keep this fight going.. to everyone who reads and follows my journey.. my army.. I give you my love and positive energy.. by the praise of God better days are yet to come..

Special love to the beautiful city of Barcelona.. a city which is very close to my heart… my prayers for you.. and for a world filled with love peace and acceptance xxx

August 2017: my latest

August 2017: my latest

When my other half is asking me when will i write my next blog post (and i see him regularly) then i know for sure that its been a while since I last posted. Today i am due to have my second cycle of this chemotherapy regime.. whilst waiting to be seen by my doctor I thought i would use this opportunity to write.

As time goes by I really find it more difficult to write, reply to people or see anyone. I want to spend all my time with my family, live in a bubble i feel comfortable in and try to distract myself from reality. But part of me feels a sense of guilt and obligation, i chose to be open share my journey and no matter what I should stay true to my word and keep writing – especially as i know there are people I don’t know personally who follow my journey some of who are from outside the UK and only get updates from this blog.

The last three weeks have been ‘eventful’ and far from easy which also partly explains my absence from my blog and social media – i have now completed my first cycle of my latest chemotherapy regime (Brentuximab and Bendamustine). My expectation was one thing and reality was another – i never thought i would be as sick as i was, but i think its the build up of chemotherapy drugs overtime in my system which left me feeling more knocked down. For one week after chemo i had extreme fatigue like nothing i can ever fully describe – the first 24hours were the worst, i communicated be gestures as i was too weak to even talk.. my fatigue improved with each day, but it took me a good week to really get back on my feet and depend less on my mum for simple tasks. I wouldn’t say i had any new side effects – but it was the level of exhaustion and being dependent on others which I found both mentally and physically difficult to digest.. it’s like you have been stripped of your autonomy..

Two weeks after chemo i was admitted back into hospital because of an infection to my PICC line (the long term tube in my upper arm through which i receive my treatments). It all happened quite quickly.. i was sat at home watching daytime TV (tipping point on ITV to be specific!) when out of the blue i began to get rigors (shivering due to a fever).. at first i tried to play it down and ignored my family’s concerns.. i covered myself in two blankets and somehow hoped i would just get better… i hate being admitted to hospital.. just the thought of it terrifies me.. however within minutes I began to feel more unwell, my temperature was high and i knew i needed to be seen.. being stubborn me I decided to go against medical, rather than going to my local emergency department… i asked my mum to drive me 45min (in rush hour) to the hospital in central London (where i receive my chemo).. A risky and silly move, but i wanted to be under the care of my current haematology team. As a doctor i would find my actions shocking (as did the doctors in the emergency department).. anyway.. i made it one piece.. and most importantly i received impeccable care.. on arrival my temperature was above 39, my heart rate was above 150 and my blood pressure lower than normal, I spent over 4 hours in the resuscitation section of the emergency department where i had my PICC line removed, received antibiotics and had all the relevant tests.. i was then moved to the haematology ward. Thankfully despite all the drama my blood tests were not as bad as i would have expected and after a few days of antibiotics through a drip i improved and was discharged back home (weekend just gone).

I have been very open and transparent from day one and i have always vowed to stay that way, the most accurate news about my health will be that which is found in my blog.. i know this blog has dragged out, but today I wanted to touch on another topic which i hope to discuss in more depth in a separate post (as i always say and never get round to doing!!).. when i was told about the bad news of my chemotherapy treatment having not worked, my doctor suggested that I should see a psychologist to talk about how i feel about being unwell – a recommendation he gives to all patients of my age who are in a similar position to me.. my initial reaction was “no i am fine thank you, i am a tough cookie”, but he somehow convinced me to give it a go and so i agreed. I have now had two sessions with my psychotherapist which have been informative, interesting and helpful least to say.. she is helping me channel any worries and negative thoughts i may have such as thinking of treatment failure/death (which are inevitable however strong and positive you are!). However hard it is, i am trying my best to maintain the same level of positivity and keep the fight in me alive.. mind over matter! What is so excellent about the care my haematology team in this hospital have given me is this holistic approach to caring for me – mind and body. I would like to speak about this more – I really have nothing to shy away from, but i feel i need to dedicate a separate post for this.

So that was all the boring medical news and updates..

On the plus side.. it was my birthday.. happy birthday to me!! Another birthday celebrated whilst fighting cancer! I turned 29!! A lady never says her age.. but frankly i am proud.. every birthday is a milestone! Thankfully i wasn’t in hospital on my birthday (i fell unwell and ended up in hospital less than 48hours after… phew.. near miss). I had a mini birthday with my family and inlaws which was beautiful.. my other half ordered the cutest cake! Family really is everything… as each day passes i realise this more..

Beautiful balloons and gifts from my friends for my birthday.. and also other gifts i have received but never had a chance to post yet… apologies for the delay!

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From my beautiful inlaws!

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From my amazing aunt and cousin Sora

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From the stunningly beautiful inside and out.. my spiritual rock Melissa.. p.s. Thank you for the times you were by me and for the heartfelt prayers…

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(These beautiful flowers lasted forever!!!! Just amazing!)

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This gift.. i just dont know what to say or how to express myself.. but it left me speechless and i still am… words really are powerful.. thank you to the best English teacher i ever had.. thank you for everything you taught me.. thank you for being so loving and caring.. you are incredible.. i love you

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Finally last but not least a massive thank you to a person I don’t know personally but who sent me one of the most heart felt heart warming letters which really left me in tears.. Zainab Al Hadad thank you you beautiful soul.. thank you so much and thank you for the turab which to me is worth more than gold. Thank you so much..

I really apologise for being so slow.. i am so so thankful to everyone for everything.. i think i need a post just to post pictures and thank everyone properly… thank you for everyone who has messaged i am sorry for not replying to everyone.. i need to check my social media at some point and i will.. but thank you.. your prayers and support mean everything

Okay its time for me to see my doctor and then have my next cycle of chemotherapy so i have to go now.. please keep me in your prayers.. please pray that this chemotherapy will work.. I believe that every prayer counts..

I hope to stay in touch always

Lots of love, prayers, positive energy and happiness for all xxx milad

Starting a new treatment regime 

I am in the car being driven to a hospital in central London where my healthcare has now been completely transferred – today i start a new treatment in a new hospital and can only pray that with the will of God i can beat the statistics.

The last week or so has not been easy, I can’t find a single word to describe my emotions and i feel no one would really understand what its like as a doctor being told details you would never wish upon your own patients let alone a close one or yourself.

I was seen by a consultant in this specialist cancer centre last week, who went over my scan… I thought i had already heard the bad news and that was it.. but then he told me that my scan was discussed in their multidisciplinary team meeting and they believe my cancer has got bigger.. not only that.. there is only a 30% chance of getting me into remission (cancer free)… my doctor may say 30%.. i say with the will of God 100%…

Today i am starting this new treatment regime which is given over two days, the drugs i will be having (for those interested in details) are Bendamustine and Brentuximab – the latter being given on the second day only. I will have this every three weeks and then have a scan several weeks after my third cycle – to see if there has been any change.

In my last post I briefly mentioned i was admitted to hospital for an infection – a quick update on that.. I decided to self discharge (something I am really against and would never let one of my own patient do).. i had my reasons to want to walk out of hospital – primarily because there were no beds on the haematology ward (something beyond anyone’s control as our broken NHS is far stretched and there are not enough beds).. but i was put on an orthopaedic ward which had poor hygiene the details of which I can’t find myself writing and nursing staff who are not used to dealing with patients like me at all.. it was an awful experience – that should never happen to any patient – let alone a patient who has been given life changing news. I reached a compromise with my doctors who let me leave the hospital on the condition that i return every day to the haematology unit for drips of antibiotics.. which i did agree to.

Despite all the antibiotics i have continued to have high temperatures which my doctors tell me is most likely from my cancer. I have been put on steroids which thankfully has helped with my swallowing.

I feel emotionally drained and physically exhausted – i have not given up – i am dressed and ready for today – to try new drugs – to beat this cancer… but even the tallest and strongest of mountains will have some erosions and parts of it will crumble and fall with the changes in time, but that never stops a mountain from still standing high and strong.. and thats what i hope i can be.. a mountain taking hits but still standing…

Since hearing all the news i have my perspective on life has really changed even from 3 weeks ago… i cant explain it.. but for me nothing in this world really matters anymore as much as spending as much time with my family.. i am no longer setting myself deadlines of when I want to be back at work or when i to have my hair grown back and have that wedding… i have never valued time as much as now.. i wish i had this wake up call sooner.. every minute counts.. live it to the maximum and don’t waste time over petty things..

Right.. I am here in hospital now..

I won’t give up.. i will keep this fight going till my last breath.. i can beat cancer.. and i will.. however long it takes.. even if we run out of options.. i will find a way.. 

Thank you to everyone for all the support and prayers which i am so desperate for.. with so much going on im slow to open my messages and social media.. i thank every single person who has thought and prayed for me.. as much as i want this for myself.. I really want to one day share some good news with you all.. this will always be all our fight… 

Getting ready for chemo now.. deep breath.. in the name of God.. please cure me from this disease…
Love and positive energy from a small fighter in a big world..
Milad x

More bad news..

Today i was admitted into hospital after becoming unwell last night with a temperature.. leading up to it over the last few days i had developed pain in my lower neck and chest.. especially on swallowing.. food getting stuck when i swallow meaning i had to take smaller bites to get anything down..

Thats not the real bad news..

About 15 minutes ago i was told that my scan has shown that i have not responded to chemotherapy at all.. the reason i have developed lower neck pain, chest pain and difficulty swallowing is because of the cancer..

This is by far the worst news i could have heard and by far the worst news my doctors finding themselves having to break to me.. its a case of doctor comforting patient and patient comforting doctor.. 

The news comes as no real shock to me.. when i developed the neck and chest pain with the difficulty swallowing i knew it was the cancer.. yesterday i was telling my friends that i am 80% sure my scan would be bad news.. when you reach the stage i have you know what cancer is.. you know when you are sick.. and i am sick..

All is not lost.. i am still alive.. the sun is still shining.. i have my loved ones around me and a God which is compassionate…

This week i will start a new drug called Brentuximab – of monoclonal antibody.. i know we are running out of treatment options.. but I pray for pain free days.. and health which I really miss..

I hope to share more once i have more time to take in this news

For now i ask for your prayers.. not just for me.. for my family and friends too.. especially my mother… 

XxxX

Bald is Beautiful

Bald is Beautiful

Today marks one month since i went completely bald, something i havnt really discussed in depth in any of my posts.


When i was diagnosed with cancer for the first time and despite the many chemo sessions i had, i never shaved my hair. I let my hair naturally fall out, my hair loss was very gradual spread out across my treatment. I was always against shaving as for me it was important to hold onto every last strand of hair – i was determined to beat chemotherapy and retain some hair – even if its just one hair strand. By the end of the chemotherapy i was left with few hairs very thinned out and patches of bald.. for me that was a triumph.. I hadn’t lost all my hair.. when my hair began to grow out it was uneven and many told me to trim my hair so it looks neater.. but i was proud of those longer pieces of hair which had defied the toxicity of chemo drugs and survived.. 

My experience with hair loss first time round was different to that which I experienced this time round.. very different.. for the first two weeks after my first round of chemotherapy i had very little hair loss.. at one point i even thought that i will never loose all my hair.. i would tell my nurses and doctors that i still have a full head of hair.. even though i was told several times my hair will eventually all fall out, inside me i chose to believe otherwise – i was in complete denial!

By week three my hair began to fall out more.. i would leave a trail of hair everywhere.. but it still was quite gentle.. then i began to develop an extremely sore scalp, it felt like someone had got a sharp knife and made many cuts across my scalp.. it was very painful touching my head and even moving my hair about.. putting my head down on the pillow at night was also uncomfortable.. a day or so after my scalp became painful i noticed i was loosing more hair.. but i still had a full head of hair.. then one day something I really never ever ever expected in my wildest dream happened.. i went to sleep one night with a full head of hair.. and i woke up the next morning looking like a different person.. my pillow was full of hair.. it literally looked like i had a furry animal on my pillow.. but even at that point I hadn’t fully realised what had happened.. it wasn’t until i went downstairs and saw my mum gasp did it hit me that something was different.. looking in the mirror i saw that i had completely lost the hair at the back or my head.. i looked like a guy with a funky hairstyle.. the back of my head bald with a turf of hair left at the front of my head… i looked ridiculous.. i had lost the bulk of my hair.. i immediately took photos to share with my best friends.. i remember telling them how i had gone to sleep as one person and woken up as another..

That day what was left of my hair began to fall out in chunks.. i had never ever planned to shave my hair.. again i was determined to hold onto every last hair.. but seeing large chunks of hair fall everywhere was disgusting and I decided i would finally shave.. I messaged two of my friends and told them i would shave that upcoming weekend with them present (they were by my side when i cut my hair after my first diagnosis of cancer)… however by the evening of that same day i had lost so much hair I decided i wasnt going to wait till the weekend… so my fiancé got his razor, and in the middle of my parents living room (newspapers beneath me), i sat cross legged and let him shave off what hair remained.. my mum and sister Vian watching over me.. when he was done i got up and looked at myself in the mirror.. for the first time i saw myself bald.. I thought i would cry and be emotional.. instead i smiled.. i smiled because i felt a strength within me.. they say a girls crown is her hair.. but with or without hair i will always wear a crown of hope and positivity of my head.. and that is priceless…

Being bald is beautiful.. its beautiful because looking at myself in the mirror i see myself fully stripped back of anything that may beautify me externally.. this is me raw.. in a day and age where we are pressured to live a instagram picture perfect life i stand boldly bald and confident.. only i will determine what beautiful is.. i have always been very confident and never felt self conscious even at the peak of my health.. but this has made my confidence grow more.. my looks will never defy who i am.. i do not need to hide behind layers of makeup and a wig of hair to be beautiful.. not to say there is anything wrong with wearing makeup or a wig (when the occasion calls for it)… i am determined to defy that mould which society expects us to fit into.. i am who i am.. with or without hair.. confident and positive.. i am beautiful i tell my reflection in the mirror.. every single human is beautiful.. colour, size and shape doesnt matter.. let your inner beauty shine through.. don’t let anything put you down.. be you.. because you are beautiful!

I am bald.. I am beautiful..

Enough hair talk.. or no hair talk.. before i go a quick health update.. i have been a bit poorly over the last few days with a cold and sore throat.. thankfully i am now on the mend.. i also had my PET scan this week.. now it is just a waiting game.. i nervously wait for that life changing news of whether my cancer is responding to treatment.. i am trying my best not to worry to much as it is all beyond my control.. i leave my fate in the hands of God and just pray for some much needed good news!

Always ending on a positive note and sharing the love of those amazing people in my life whom i am blessed with…

Layla.. thank you so so much from the bottom of my heart for this lovely surprise.. what a interesting read.. i pretty much finished it within a hour.. such a thoughtful gift from a beautiful soul.. love you so much and wish i could give you a massive hug xxxx

My soul mate and better half was away for about two weeks and surprised me with this.. blessed to have you in my life.. my everything xxxx



Habibti Sarah D one of my lil sisters loyal and beautiful friends.. thank you so much for all the support and love.. your gifts which are on point!!! You are so cute!! Love you to bits xxxx


My beautiful cousin Sora.. thank you for getting me these individually wrapped luxury dates from Dubai.. exactly what i wanted! Love you so much!!!! XxxX


My amazing friends Howra and Zainab… I can’t thank you enough for your continuous support and love.. for the beautiful flowers (which i’m kind of obsessed with – ive taken so many photos of them in evert angle lol) and your tasty treats.. but most importantly for being such loyal and caring friends.. I appreciate your visits and cant thank you enough… thank you for being you.. for all the laughter and great time.. i love you both so so much xxxx


Marzena… some times in life we cross paths with people for a good reason.. i am so thankful and lucky to have found such a close friend in you.. you are one of the most genuine souls i have ever met.. your friendship is a blessing.. thank you for this beautiful gift – great minds think alike.. i have been using this product for a while and i am totally obsessed! My refill was just about to finish.. this cane at a perfect time! thank you!!!! Love you lots xxxx


Last but not least… Big thank you Amna for everything.. i dont know how to even describe what you mean to me.. i love you so so much, thank you for everything.. you are really one of a kind.. thank you for today.. was so lovely having you over it made my day! It is so rare to find someone like you who is so stunningly beautiful on the outside and inside.. love u tons.. and thank you for the chocolates xxxxx

Lots of love and positive energy for everyone.. i pray the next time i write a post i have some positive new to share xxxx

Second cycle of salvage chemo over

Second cycle of salvage chemo over

I find it difficult to write with so much going on in the world.. in particular the horrific fire in London two days ago which saw so many innocent people being burnt alive.. my heart is very heavy.. I feel embarrassed because nothing i have experienced or will experience is anything like what others go through.. i count my blessings over and over again..

I will continue sharing my journey.. to raise awareness.. not because i need sympathy because I really don’t.. i am so blessed.. despite everything I would never swap my life or journey for someone elses.. i am lucky..

Anyway… earlier this week I was discharged back home after spending over a week in hospital. 
In my last blog post i wrote about my chemo regime being changed due to a side effect i developed from my first cycle of chemo (ESHAP)… the plan was to change to a different chemo regime called IVE which like all types of chemotherapy comes with its own risks and problems..
I was admitted into hospital having psyched myself up for IVE and its possible side effects.. in particular the risk of seizures (fits) and encephalitis (brain swelling).. i had never felt completely comfortable with this new regime but i’ve learnt to be more of a patient and less of a doctor – to trust the specialists and to have full faith in God and what he plans..

And God had other plans.. on the day i was admitted I was told that my chemotherapy regime would be changed again.. my doctors were unhappy to give me IVE as in the past i have collapsed during chemotherapy (https://listentoyourbodysite.wordpress.com/2016/11/29/finishing-off-chemo-in-style-2nd-hospital-admission/) and despite me being convinced that what happened in the past was due to a reaction to a medication my doctors still believe it could have been a seizure (fit) and hence they decided giving the chemotherapy IVE would be too risky.. i’m not going to lie i was very angry and frustrated when they told me they were changing my treatment plan again.. but then i think it was Gods intervention… i had been so anxious about having IVE chemotherapy and had cried for hours thinking about it.. that actually my doctors making last minute changes was going to be for the best… 

So what happened with my chemo? Without rambling on too much, my doctors created a off protocol/unlicensed regime for me, they substituted the drug in the ESHAP regime which gave me ear problems  with another drug.. it took two days for the paperwork of this new regime to be approved before I could start my treatment.. I basically spent two days in hospital twiddling my fingers..
Eventually I was given this new chemo regime over 5 days.. thankfully i did not experience any unexpected side effects.. i mean when you’ve had so much chemotherapy everything becomes normal.. you just learn to get on with it and keep smiling to the world! The only real change with this chemotherapy is that on my second day of being back home i developed really bad pains, initially in my neck and chest.. it felt like i had been punched and battered.. that pain then spread to the rest of my body, every inch of my body felt bruised, i found it hard to move, and no position was comfortable, even trying to undress myself was painful – clothes rubbing against my skin felt sore.. thankfully since this morning that pain has now pretty much gone and i am doing much better! As with my ESHAP i have body swelling and a chubby face – which i call “chub chub”.. i am hoping that begins to go down in the coming weeks..

What happens next? I sit here and pray and pray and pray that the chemotherapy i have been given will work.. i have a scan in the upcoming weeks to see if my cancer is responding.. I desperately desperately need good news.. as i know it will be a matter of time before i am told my treatment options have been exhausted.. we are not there yet and i pray we wont ever reach that point.. 

 

To all my beautiful family and friends who were beside me whilst i was in hospital.. especially those who were fasting.. i thank you so much.. every single one of you… you know who you are.. i love you all.. my mum, fiance, sisters (esp Vian – you put up with my dramas), my amma, Jum and Zooz, Avan, Jichi, Neam, Huds, Iman, Zahra, Leen, Sukaina, Marwa, Aseel.. if i have forgotten anyone im sorry its my chemo brain!
.

Avan.. my loyal friend.. only you would spend your birthday by me in hospital.. i cant thank you enough for the hours you have spent with me.. i wish i could have thrown you a proper birthday.. but that day was so fun!! It didnt feel that bad being in hospital.. thank you for filling my room with food daily..

Jich thank you so much for spending most days beside me.. for even staying and doing your work from my hospital room.. i am blessed to have you.. that balloon is just the best!

Neam and Iman.. thank you for all the healthy snacks.. im sorry i didnt take a picture!! Love u guys

Huds.. thank you so much for your thoughtful gift and card.. blessed to have you..


My beautiful Leen.. thank you for everything.. your visit meant a lot.. thank you for the chocolates.. and I don’t know how to thank you for all the help and support.. i am so grateful to you for picking up my medication after i was discharged and for driving to my house to drop them off.. i am so lucky to have the most amazing and caring friends.. i love you so much.. 

Aseel.. thank you so so much for visiting, your gifts were so cute, loved them!

Marwa and Sukaina.. friends.. colleagues.. and sisters for life.. thank you for visiting and for the chocolates.. i cant wait to get better and return to work and for us to be together again.. love you both so much

Ok thats a wrap for today.. but one last massive thank you to everyone who messages, emails, texts.. i feel so humbled to have an overwhelming amount of support.. I appreciate everyones prayers and advice.. thank you so much

I will be praying for you all.. please don’t forget me in your prayers.. sending you all love and positive energy.. life is beautiful x