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!






From my beautiful inlaws!



From my amazing aunt and cousin Sora


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…


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



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


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… 


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

Changing my chemotherapy regime..

It has been three weeks since I received my first cycle of ESHAP and a lot has happened and changed since.. so here goes my summary of events..

Thankfully after coming out of hospital and with the help of medication the swelling around my belly (water retention) came down. My nausea has also been well controlled which has been a relief..

I felt it was going really well.. that was the case for the first few days of being home.. then in the early hours of one morning, I was awoken by a noise in my ears.. a ringing.. a high pitched sound.. like a broken radio/tv.. a constant beep + shushhhhh noise.. in fancy medical terms its known as ‘tinnitus’… in lay mans terms: a very frustrating noise in your ears leaving you wanting to scream and poke at your ears so it goes away – do not do this! 

This noise in my ears has persisted now for over two weeks.. it has become part of my life.. I can’t remember what it was like to hear without a constant background noise drilling in your head.. for a few days I thought it had improved and was hardly there, im not sure if it was just me getting used to it.. but this morning i woke up at 6am with this noise ringing away in my ears like a alarm.. it can be so exhausting as i feel I cant get any good sleep and that in turn leaves me with a migraine.. during the day it’s manageable because other noises distract me, but at night and in the morning when everyone is asleep and the house is pitch silent, thats when this noise is unbearable.. I just wish I had a remote or something which could switch it off…

So noise in my ears (tinnitus).. what is it all about? Well.. unfortunately one of the chemotherapy drugs i had (Cisplatin) can cause damage to the inner ear (ototoxicity).. that occurs in 40% of adults who have this drug (check me out! Knowing these figures.. geek!).. and yes unfortunately as per usual i like to fall in the lower percentages and get every side effect.. 

My haematology team sent me to the Ear nose and throat specialist and i had a hearing test.. that involved wearing head phones and each time i heard a noise through the headphone i had to press a button… thankfully my hearing test came back normal.. i am still not deaf.. I can still hear you all (*smirks*)..

After having my hearing test I was seen by my haematologist in my local hospital who told me I should be okay to continue with the same chemotherapy regime (ESHAP) but have the dose of Cisplatin reduced (the drug causing the noise in my ears). However i was referred to be seen by the haematology team at a hospital in central London which has a specialist cancer unit – basically this hospital is at the top of their game..

So off i went to this hospital.. which for me as a patient is very exciting.. its on par with being sent to a chocolate factory (if you love chocolate like me).. as a patient you want to be seen and treated in the best place.. and this hospital is fancy and shiny and sparkly… (the kid in me comes out..).. but most importantly its a research centre and has pioneering treatments which no other hospital in the UK has…

My consultation with the haematologist at this hospital was a lengthy one.. fortunately i had my mum, younger sister and one of my best friends F.Jichi with me, which helps when there is a lot of information to take in.. This is what i learnt..

1) my lymphoma falls into the rarer category of “chemotherapy resistant lymphoma” – as my cancer came back so quickly it means chemotherapy doesnt work as well on me

2) due to the ringing in my ears (tinnitus) it is not safe for me to continue with the same chemotherapy regime (ESHAP) as another dose of this chemotherapy can make me permanently deaf.. the ringing in my ears is a sign that there has been damage to my ears even though my hearing test was normal..

3) i have to change to a different chemotherapy regime called IVE.. different drugs.. different side effects.. my third chemotherapy regime.. it feels like i would have tried every chemotherapy drug by the time i get better!

4) if my cancer responds to the chemotherapy i will have a bone marrow transplant using my own stem cells.. and if this is successful there is a 60% chance i will stay well, and a 40% chance my cancer will come back again…

5) if my cancer doesn’t respond to this new chemotherapy regime i will need to try different drugs and i will then need a bone marrow donor.. my sisters have a 25% chance of being a match.. everyone else including my parents have a one in a million chance of being a match (nice..)

6) I will start my new chemotherapy regime in the next few days as soon as there is a bed for me in hospital (i am at home at the moment)

That is all I can remember from the consultation.. 

I left the clinic room feeling okay.. but when i got home.. i broke down.. i held onto my fiancé and just cried on his shoulder uncontrollably.. i am not a weak person, i am not negative at all and i am not scared.. i am just mentally exhausted.. and really disappointed that things just dont seem to be working out.. it is tiring.. 
What really upset me was reading that one of the drugs in the new chemotherapy regime IVE (Ifosfamide) has a 10-15% chance of causing encephalitis (inflammation and swelling of the brain) which can lead to seizures (fits), coma and very rarely death. I will therefore be started on a drug to prevent fits (phenytoin) before having the chemotherapy… I am not a pessimist.. but having had so many side effects from my treatments so far I would not be surprised if i react badly to this new chemotherapy drug! I pray it will go smoothly.. it will.. it will.. thats what i keep repeating!

Hairloss is something else i want to talk about – my experience this time has been different.. but i think i have talked a lot today and will leave that for a separate post.
Always ending on a happy note..
Big thank you to everyone who has read my article on the muslim vibe and for the comments which i have read but not managed to reply to.. and a massive thank you to everyone who has been in touch your support means a lot to me! A special thanks to the team at Muslim vibe and specifically Salim for asking me to share my story.

The link to the article: https://themuslimvibe.com/featured/a-doctors-journey-fighting-against-cancer

(I will also put the link up in my blogs main menu for ease)
Thank you to my beloved cousin Seja and her husband for visiting and for these beautiful flowers.. i love you!

My amazing best friends Jumanah and Zahra who are always by my side through the thick and thin.. thank you for keeping me company and for the gorgeous plant and cute clementine tree.. love you so much!

My beautiful best friend jich.. thank you for coming to my appointment with me, for always talkng sense into me, and for trying to fatten me up with this scrumptious cake! I loveeee you!!

To everyone following my journey.. thank you for your support.. my love and prayers for everyone… may you all be blessed with eternal happiness.. sending you lots of positive energy hope and smiles!

First cycle of ESHAP completed

After spending a week in hospital i was finally discharged home earlier this week.

I have now completed my first cycle of ESHAP chemotherapy, which was given 24 hours a day for 5 days non stop.
(New chemo book!) 

This chemotherapy is very different to the one i had before. The best way i can compare the two is that with the first chemo i had it was a big hit then and there after which i would slowly begin to recover.  With this chemo regime it feels like i have been pumped with toxins the effect of which are slowly unfolding with each day – its slow and painful.. i am sicker with each day, and the fatigue is like none i have felt before. 

I have been put on high doses of steroids (given through a drip for 5 days and now switched to tablets), and was given large volumes of fluid both of which have contributed to me becoming very swollen. I hate steroids! Steroids cause water retention and change the distribution of fat in your body, so i have been left with a ‘steroid face’ ‘moon face’ ‘chipmunk face’ whatever people prefer calling it these days – in simple terms i look like iv been pumped with fillers in my face – not a look I would ever go for! I have also had a lot of water collect around my belly which makes me look pregnant – about to pop – I was even asked by a junior doctor if i could be pregnant! I must say i was not impressed by that comment and found it frustrating because a simple look through my notes would explain my physical appearance. However when i look back i really don’t blame her, i would have probably made the same mistake if i was in her shoes – its so much easier to be critical as a patient. 

I think only women who have been pregnant will relate to me when i say how uncomfortable it is to carry a heavy belly, getting in and out of bed and walking is a discomfort – but i am not pregnant – i am just carrying water! I am on medication which has really helped flush a lot of that fluid out of my body and i feel so much lighter and more comfortable which is such a blessing. Incase i havnt been clear enough.. i really really hate steroids, not just because it makes me look like a balloon, but because steroids stop me from sleeping well at night and really make me agitated. To top it all off i am back on my Zoladex injections (to preserve what can be preserved if anything of my fertility) and these injections as iv mentioned in the past give me night sweats. Steroids + Zoladex = insomnia!

Thankfully though its not all bad so far, i have not had severe nausea and vomiting yet, and only briefly had a sore mouth which subsequently settled.

My hair? So being naive or more like in complete denial i was secretly convinced that surely after 5 days of chemo my hair hadnt fallen out so surely i must be an exception… nope.. thats not that case.. hair begins to fall out slowly 5-10 days after.. and since returning home my hair texture has completely changed, my scalp has began to feel sore and i am beginning to leave traces of my hair behind me… RIP hair.. however sad it may seem the honest truth is it really isnt as bad loosing hair for the second time round – i’ve been there and done that.. it was definitely more shocking and upsetting first time round.. also i had only managed to grow my hair out into a pixie.. its not like i am loosing years of hair growth.. its okay.. hair grows back.. its just a shame the painful hours i spent massaging my hair and putting a cocktail of oils to help it grow – I could have probably opened a YouTube channel on hair concussions (no way- never in a million years!)

So what is next? I am seen in hospital twice a week for blood tests.. with this chemotherapy regime my bloods are likely to drop more dramatically than before so they are closely monitored. I will be re-admitted to hospital in a few weeks time to have my second cycle of ESHAP.. after which I will be scanned to see if my cancer is responding… I pray it is..

As I mentioned in my last post my sisters engagement and wedding fell on the days i was in hospital.. on the day of her engagement my family had opened FaceTime for me to see everything from my hospital bed (my fiance by my side), unfortunately at the same time my heart rate had gone up and i was having a heart tracing and being given medication – we had closed the camera from our side so my family wouldn’t know – it was just a shame because i didn’t really get to see it well! 

As for my sisters wedding day i was fortunate to have the company of the most beautiful humans, my friends Amna, Jumanah and Zahra were there for me that day. I was also fortunate to have videos and pictures sent so it was great – a beautiful wedding – beautiful couple.

A final note to end on.. i want to thank my fiance who really is my all, my incredible parents – especially my mum – a woman like no other, her strength love and support is superhuman, my amazing family, inlaws and friends i love you deeply.. 

Thank you to the beautiful souls who visited me whilst in hospital – i am blessed with such amazing friends – Avan, Jumanah, Zahra, Neam, Iman, Amna, Kosar, Howra, Fatima, Zahra – i hope i havnt missed anyone out!

Iman and Neam – thank you for the beautiful flowers! Love u both!!

Avan – thank you so much for this gorgeous Quran – and for the daily snacks and treats! Love u!!

Habibti Amna – thank you for your beautiful gifts – the most comfy PJs!!! Love u to bits!!

Finally Jum and Zooz – no pictures (sorry) – but I can not thank you enough for looking after me at my sickiest – for all the food love and care.. I love you!

Bed time for me – sending everyone out there my prayers for never ending love hope and happiness.. God is Great!

First cycle of Salvage Chemotherapy

Its good to be able to pick up my phone and write again.. even if its with just the one hand!

After over a day in hospital having some pre chemo checks i can finally say I have started chemotherapy again. 

I had a new PICC line inserted into left arm, after three failed attempts they managed to get one in. Unfortunately its left my arm feeling very sore so im not moving it much. My previous picc lines and chemo damaged veins mean its getting harder to put a line in each time. Nevertheless enough weeping im thankful and grateful to have the PICC line. 
(Sorry for the use of medical jargon, for those who havnt followed my blog; a PICC line is a long plastic tube inserted into a vein in the upper arm using a needle, the tube is fed through the vein all the way to the tip of the heart – its through this tube i recieve the chemo – this PICC line can last for months, making it useful for those needed treatment over a long time – like me – unfortunately…)

This chemo regime is called ESHAP, its what is known as ‘salvage chemotherapy’, even as a medic im not quite sure how to fully explain it, but the best way i can think of describing it is as a ‘rescue’ chemo which is more intense than before. Its made up of 4 chemo drugs, the chemo runs over 5 days (yes five!) for 24 hours non stop.. i will be in hospital throughout the duration, and go home once i am stable enough.. then three weeks later i will be back to repeat this all again! So this is my new bestie who is attached to me by the hip.. no PICC (lame joke!!.. chemo brain kicking in! and no my new bestie has no name yet..): 

(Sorry the picture is dark.. its still 5am and i am too tired and weak to try and find the light switch.. not in the mood for a proper photoshoot session with my drip!)
Im really happy to be holding my phone and writing (i hope i am making sense today).. i started the chemotherapy yesterday and lets just say its as horrible as i imagined if not worse.. its still early days (less than 12 hours so far) and i have been told to expect much more side effects with this chemo regime.. but the one thing that hit me pretty quickly is immense pain all over my body.. now I don’t know what everyone else experiences, but this is just my individual experience.. the best way to describe it is as if someone has beaten you and up and completely bruised you (disclaimert. I havnt been beaten up in the past – thankfully).. i feel now im getting used to the pain and feeling so sore.. just laying in bed is painful, or even trying to undress.. its touching the surface of my skin which feels like it is battered… luckily i have managed to get four hours of sleep (hence why i am so perky and able to write), i am now getting used to staying still in one position so im not moving my body much and feeling the pain.. that is my main symptom so far… ill keep you posted as things change when the chemotherapy begains to kick in more… 
One last rant.. with this particular chemotherapy one of the biggest concerns is damage to the kidneys, so i am on a drip of fluids all day (to hydrate the kidneys) and a medication (IV diuretic – for those who understand my jargon) which makes you pass urine every hour to flush the fluid out.. i am really sorry for sharing too much information (hopefully no one is offended) but i am trying to explain that it is really really difficult feeling weak and dragging a drip backwards and forwards to the toilet all day.. another reason why this chemo regime is horrible!

Today is a very important and special day.. its my sisters engagement today.. my older sister (before rumours start flying around lol!).. i am so so so happy for her but every inch in me feels so broken.. and i write this as my tears flow down.. i am so heartbroken that i miss both her wedding and engagement as i am in hospital.. I wasn’t allowed to delay my treatment and i am tied to a hospital bed so I can’t physically be there.. now what people don’t understand is the guilt that comes with being ill.. when you are ill it seems like everything is about you.. this all couldn’t have happened at a worse time.. i feel i cant be there for my sister but worse i feel her day will never be the same.. i know how upset and devastated she is because of my health and how insistent she was to cancel everything.. but life goes on.. and Maryam if you ever read my blog.. i am so sorry for this.. you deserve to get married in better circumstances.. i wish i could be there.. she has stood by me through the thick and thin and i feel i am letting her down.. i dont know why i am writing this here.. im not good at expressing my emotions.. my blog is where i vent.. i just pray no one is put in this situation.. no one can be fully happy on their big day knowing they have a family member in hospital.. i genuinely look up to my sister and she makes me feel so proud.. she is the most selfless human i have ever met.. if hearts were measured in gold hers would be way off the scales.. i hope today and the wedding day go by as best as they can.. and that my situation does not change any of the beautiful moments which are meant to be… after all that.. I forgot to say.. Congratulations big sis i love you more than the world times a billion trillion.. 

Ok enough crying and writing, my nurse will think i am loosing it.. as thats the last thing i need lol (not to say there is anything wrong with mental health problems – which i believe are equally important as physical health problems! Half the time i sound like a MP who is desperately trying to be politically correct.. *rolls eyes*)
To my fiancé, family and friends.. and everyone.. i love you all.. thank you for the messages prayers and support… 

My fiance (my all.. so cheesy.. but you are my rock) and family (my incredible mum, dad and sisters) are everything.. they havnt left my side.. my inlaws I know you dont read my blog but i love you.. my amazing friend Avan thank you for being by my side and holding my hand when chemo was started yesterday.. my MIK (Jumanah, Zahra, Jich, Neam, Iman, Huda, Sama and Fatty) love u all!

Sending everyone lots of love and prayers during these holy days of the Islamic prayers.. please keep me in your prayers which i am in desperate need for.. now more than ever xxxx