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