Wow its been a while since i opened my blog and got behind the screen fingers on my keyboard writing away…
Quite a bit has happened since my last blog entry, there have been the downs but also good days..ill try my best not to waffle too much but give a concise update of events..
When i wrote my last blog entry I explained how happy i was that i was discharged from hospital, and the ‘collapse’ i had was put down to a medication i was given (i strongly agreed with this). That all changed three days later (after the weekend), i received a phone call from the hospital. One of the doctors called to tell me that they were worried my collapsed was due to a ‘fit’ (seizure), and that I shouldn’t drive until further notice in the mean time they are arranging for me to have a further brain tests (EEG). An appointment was made for me to see my consultant and so i went in and was basically told the same thing but face to face.. it was explained to me that chemotherapy can lower your threshold for having fits and thats what they think happened.. you’ve got to love chemotherapy right? I mean what side effect doesn’t come with it im intrigued! I was also told i would need to see a neurologist (brain doctor).
I really respect my doctors opinions and their concerns, but for me I don’t believe i have had a fit.. thats not because i feel ashamed to be labelled as having had a fit, nor am i’m worried about any taboo that might be associated with it (if there even is one), i’ve been very open about my health and accepting of all that i’ve been diagnosed with.. but honestly i am not one bit convinced about this.. its very frustrating because sometimes doctors don’t realise the implications of throwing around a diagnosis.. i’m sure most doctors reading this will relate.. its so easy to label a patient with something when you dont have a definitive answer.. how many times is this done by doctors, so they feel good about themselves, for plugging that medical hole of uncertainty with a diagnosis.. okay i know i am complaining a lot, but i am currently banned from driving for a minimum of 6 months and this may change to 12 or more (the reason there is a ban on driving is because you have to be seizure free for a certain period of time before you can drive again, out of concern that you may have another seizure and if it happens whilst you are driving it can be very dangerous to yourself and others)… here i am hoping to get better and resume normality and everyday something new gets in the way!
Enough of the waffling and back to normal talk.. so i went along and had my EEG which looks for any seizure activity.. which is similar to an ECG (heart tracing) but this is a tracing of the brains electrical activity.. it was actually an interesting experience because i have sent patients to have an EEG’s, but i had never seen it being done (kerching! One to add to my book of medical experience).. unfortunately i wasn’t able to get any good photos that day as i was very ill and weak, barely able to stand on my feet (so embarrassing i had to be put into a wheelchair)..
this is the only photo I captured.. so this was the bed i had to sleep on, and then wires (electrodes) are stuck to the scalp.. as i have a few hairs on my head it made it easier! The electrical activity of the brain is measured to look for any abnormalities..
This picture explains it better (taken from http://www.aviva.co.uk/health-insurance/home-of-health/medical-centre/medical-encyclopedia/entry/test-eeg/)
I am still waiting for the EEG test result and i am still waiting to see a neurologist.. i am hoping they will tell me i have not had a seizure and lift that driving ban! Yes I miss my car..
I also became unwell again not long ago and ended up in A&E.. how awkward and embarrassing it was to be taken to the hospital i have worked in, and to see my colleagues when i am wearing a robe and pyjamas about to throw up everywhere.. my rigors (shivers due to fever) started again.. earlier that day my PICC line had been flushed.. it felt like i was going to live my sepsis experience all over again.. thankfully as my immune system was not as low as last time (i wasnt neutropenic) i got better quickly.. my PICC line was found to be infected and had to be removed..
I feel so much better since my PICC line was removed.. finally i can shower without needing to wrap cling film around my arm.. and i can sleep in any position without worry! Unfortunately if i need more chemotherapy i will need another PICC line.. hopefully not!
I want to give a big shout out to the amazing A&E staff at my hospital, i have worked in A&E in the past and i know how challenging it can be, the care I received the night i was taken to hospital was just superb! I feel A&E staff dont get enough recognition for their hard work!
Okay i think im done with all the negative talk.. i’ve also had good times.. it was my mums birthday early in the month.. it was my first time going out for tea and dinner in months and months and months so that was great! It felt amazing to leave the house for a few hours.. FREEDOM!
I am also so happy and thankful to have spent Christmas at home and not in the hospital! Its one of my favourite times of the year and i was so worried I wouldn’t be home that day.. oh and merry Christmas to those who celebrate it and happy holidays to everyone else!
Here are a few pictures of my family’s christmas lunch!
So what next?
I have my PET scan coming up.. waiting nervously for that… i’m also waiting for the EEG result and neurologists input.. more and more patience!
Ending on a positive note..
From my beautiful cousin Sora.. miss you so much.. THANK YOU for this beautiful yellow rose – my favourite – LOVE U LOTS..
Finally.. this amazing book from a dear friend and fellow doctor Nesem.. THANK YOU SO SO SO MUCH I LOVE IT!!!!!!!! It’s such a good book so far from what i’ve read.. would higly recommend it to everyone! Thank you Nesem.. this book will stay with me for life! Love you lots!!
Sending lots of love and festive wishes.. praying the new year brings some good news for everyone and for me i pray it’s the year i go into remission..
Lots of love and hugs xxxx
4 thoughts on “Four weeks on..”
Happy new year Milad. You have been in my thoughts. May 2017 bring you the health and happiness you truly deserve. You are an inspiration. Lots of love xx
Habibty Milad, wishing you an amazing new year filled with good news, positivity, and a very speedy road to recovery inshallah. Everyone is still touched and moved by your story and it is so nice to hear an update from you. My family and I prayed so much for you during our Arbaeen trip in Iraq and you are never forgotten in my duas. I admire you so much for your strength, courage and patience. I can’t wait to hear good news about your PET scan and EEG test results. Best of luck!
Lots of love xxxxxxxxx
May this year be so much better for you and bring with it your good health so you can always have good days.
It is almost over. You are already standing on the road to recovery.
Thank you for sharing all the information. I know it is not easy reliving it, even if it is to update the blog.
Wishing you all the best in 2017
Love you tons warrior princess💖💖💖💖💖💖💖💖