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