I was discharged home earlier this week after spending over a week in hospital with neutropenic sepsis..
Thank you to everyone who messaged, called and visited me.. My family and friends for being by my side during toughest days of my journey so far..
It has taken me a few days to find the energy and will power to get back behind the screen and write.. I apologise for the lengthy entry.. I feel i have to make up for the absence and write in some detail..
Monday the 12th of September.. Other than being Eid day I thought it would be the same as every other Monday whilst on treatment, i’d go in to hospital to have my PICC line flushed (so it doesnt block up) and have my weekly blood tests.. I’d then be back home to my usual routine; watching day time TV and finding a way to pass time.. The only difference being that evening my inlaws were due to come over to celebrate Eid.. and I was looking forward to delving into the ‘Charlotte Gateau’ we had got for the occasion from Patisserie Valerie..
I went into hospital that morning, waited for patiently in the haematology unit for my name to be called by the nurse.. Keeping myself busy surfing the net (making the most of the free 1 hour wifi – i mean why not!)
I remember the weather being quite warm and i was feeling slightly faint that day, so when the nurse called me in I asked for a cup of water and she opened the window. My blood pressure was slightly lower than usual and my heart was a bit fast but i had a normal temperature. I felt a bit better after the cup of water and so the nurse proceeded. The nurse is lovely and i’m quite familiar with her, i see her every week and we usually have a bit of a chat, that day she she told me I wasn’t my usual self and if i wanted to see a doctor, i explained it was normal for me to feel this rough after a few days of chemo and i’d be okay. So My bloods were taken and then the nurse tried to flush my PICC line which didn’t seem to want to work at first, after a few attempts she was able to flush it. Before i headed home the nurse asked me to call if felt worse and she’d get the doctor to see me.. I thanked her and headed home (my mum picked me up)..
As soon as i entered the house i knew I wasn’t feeling my best, I felt very fatigued, so i headed straight to my room and under my duvet to sleep it off.. I was in bed for no more than 10 minutes when I noticed my body shaking (what is known as ‘rigors’ in medical jargon).. I was shivering like i’d just jumped into a icy river.. I called out to my mum and asked her to put more covers on me.. Whilst she hurried to get some i was feeling worse by the second.. I don’t know what my mum saw but she burst into tears.. this is a strong lady who has been through so much in her life and very rarely shows her emotions openly.. She grabbed her phone and tried to get hold of my elder sister with no luck.. She then turned to me in total panic asking me how to get a ambulance.. Between the chattering of my jaws due to the shivers I asked her to calm down and pass me the phone, i dialled the number of the haematology unit and it took two words “i’m not well” for them to tell me to come back immediately.. My mum helped me dress and looking the scruffiest i could we headed straight to the haematology unit where i was put onto a bed and the doctor was called..
Everything happened quickly.. I remember just vomiting back to back and asking for more covers.. I was seen by a junior doctor and shortly after by the consultant who informed me I needed to stay in hospital as I have a infection possibly from my PICC line but they would cover me with antibiotics until the results are back.. About three hours after having a drip of fluids and antibiotics i felt like a new person.. I was my usual crazy self.. My fiance was pushing me around in circles in the haematology unit which by then was empty as it was past 5pm.. We were stuck there waiting for a bed to become available, my consultant had specifically requested a side room so i could be isolated due to my poor immunity.. I now really understand what it’s like to be a patient waiting for over eight hours for a hospital bed!!!
Anyway.. I thought the worst was over.. I was feeling better.. I even offered to self discharge myself from hospital if there were no beds.. Little did i know I hadn’t seen the worst yet and that things would get worse before getting better again..
As no beds became available on the haematology unit i was moved to an acute ward.. which mainly has general medical patients.. The room i was moved into was terrible.. I’m a big fan of the NHS but a room with a broken toilet seat (left on the floor) is just not right! My first night wasn’t too bad.. My shivers came back but were subtle, but my blood pressure was low and my heart rate was still high.. I had an excellent nurse that first night who did a heart tracing on me and monitored me every hour.. She even called the doctor to review me overnight as my temperature was high..
The next day began with me vomiting again.. I was seen early in the morning by the haematology team -my consultant was just the nicest doctor ever – iv not seen her in clinic before but she was honestly a gem.. I was told that the results have shown my PICC line is infected and they have grown a nasty bug in my blood.. I had neutropenic sepsis (body wide reaction to an infection in patients with a low white cell count, basically a serious infection in patients with a poor immune system).
My PICC line was removed immediately and i was put on three different antibiotics and the consultant asked for me to be put on IV fluids.. I was told i’d begin to feel better.. It all sounded positive..
As the day went on i began feel rough, I wasn’t able to keep even water down without throwinf it back up.. By late that afternoon i developed bladder pain, my nurse had still not given me my IV fluids and my paracetamol which was due at 12pm hadn’t been given, and my antibiotics were not given on time.. I was begining to feel very dehydrated, i asked the nurse for my IV fluids and paracetamol and i also asked for a doctor because of the amount of pain I was in.. and my temperature kept going up.. Eventually at 6pm i had my first bag of IV fluids put up and paracetamol.. 6 hours late!! The junior doctor hadn’t come to see me and instead had only prescribed me some codeine for the pain which the nurse gave..
Now i have worked in NHS hospitals for nearly five years.. I know the pressure that both nurses and doctors are in.. But a 6 hour delay in treatment is just not acceptable.. When you are a patient your vunerable.. You rely healthcare professionals to look after you.. To treat you like a human..
However things were about to get worse..
The night nurse who came on shift that Tuesday night at around 9:30pm told me that a bed had become available on the haematology ward and that I needed to pack my stuff.. So my mum who was with me helped me pack and i was excited to move to a ward which understood my condition..
Around 10pm whilst waiting for the porter to come i began to feel really really unwell.. My shivers came back.. This time worse than ever before.. I felt my heart racing so fast that i was convinced it would stop.. I was sweating and by the minute i felt i was nearing my death.. A feeling i have never experienced before.. My mum cried out to the nurse who came, but at the same time the porter has arrived to me move me.. I told the nurse “i’m not well.. I need help.. Please get me help.. I am due my antibiotics please give me them now”, she told me the porter was here and I was going to be moved!!! The porter saw the state I was in and asked the nurse “give her something, i will wait”.. So the nurse went to get my antibiotics.. By the time she came back which felt like a year, i was begining to feel faint.. I can’t explain the feeling.. But i felt so unwell, I didn’t think I would last longer.. I held on to the nurses hand and pleaded she gets me a doctor.. I told her categorically “i am too ill to be moved.. I need to see a doctor”.. I will never forget her reply, she told me “we need to move you or your bed on the other ward will go, you can see a doctor after we move you”… Despite me shaking like a leaf and my mum crying out to her she ignored us, she didnt even check my temperature, blood pressure or anything.. She just wanted me moved off the ward.. I started crying saying don’t move me without a doctor seeing me.. But my cries fell on deaf ears.. Whilst in the state I was in, i was taken from the 4th floor to the 10th floor.. During which i felt my life being sucked out of me.. I remember telling the nurse “what if i die on the way”.. I was not being dramatic.. I can never explain how sick i was, no one will understand..
I will never forget how this nurse treated me.. I have never felt so angry in my life.. I will put a formal complaint in..
Anyway so when i got to the haematology ward my mum by then was so distressed she begged the nurses to get a doctor, the nurses on the haematology ward immediately checked my observations which showed my temperature was 39.4, my heart rate above 145 and my blood pressure very very low.. I was septic..
Thankfully my shivering began to settle as the antibiotics began to kick in.. I had over 5 litres of fluids given to me that night to try and bring my heart rate down and blood pressure up.. I had a ice pack on my head to help bring my temperature down.. My mum and one of my cousins stayed that night by my side.. I can’t thank them enough..
The doctor who saw me was very nice and apologetic.. I was so so so angry that night like i have never been in my life.. I was so appalled that the nurse priortised moving my bed over doing her duty which is to care for me. Even if I wasn’t a doctor i would know what she did was wrong.. She hadn’t even checked my observations before moving me to see if i am stable enough to be moved.. I was really sick that night.. I was vunerable.. I was so scared.. I lost the trust i had for the nurse who should have been looking after me.. I don’t even remember her name or face i was that unwell.. I am not out to attack her personally, but if there is such bad practice in some of our wards concerns have to be raised so appropriate measures are put in and staff educated.. I am so angry because how many patients face such awful treatment.. I am so shocked to see a side of the NHS i am not familiar with.. My patients mean the world to me.. I could never treat a patient that way.. I am going to put a formal complaint in so changes are hopefully made..
Anyway.. After that awful night I received excellent treatment from team on the haematology ward.. It took over a week for my infection to begin to settle and my immunity to slowly improve.. The haematology ward is excellent for patients with neutropenic sepsis.. The taps have filters to reduce any infections from normal tap water.. The ward is kept emmaculately clean.. The nurses really know what they are doing..
However I felt like i was in prison as an inpatient.. Eight and a half days i spent not allowed to leave my room.. Just the view from the window.. Luckily i had a nice view.. I would watch the train go by and spend the day trying to battle with my emotions.. Having this infection has been a massive set back.. I felt so hopeless being locked up in a tiny room.. It’s really not easy being a patient.. I am grateful to my family and friends who made my time in hospital easier.. My beautiful mum, elder sister and fiance who took it in turns spending the first four nights sleeping in the chair beside me..
It’s so hard being away from home.. I missed the simple facilities at home.. Like having a proper shower.. Despite the haematology ward being great it had its downsides, like the shower in my hospital room was broke, one day i had to use a bucket and bowl to wash (this is no exaggeration), other days i just had to wash with water dripping so slowly that it took me forever..
I am back at home but still on antibiotics as my infection hasn’t completely cleared.. My chemotherpy has been delayed (i was due to have it this week).. I need a new PICC line, which I can’t have until my infection has completely cleared up.. I am so dissappointed.. I feel like my treatment has come to a standstill.. The end point has been pushed further back.. What a big set back..
Anyway.. I’m tired of writing.. Apologies i didnt take much photos during my stay in hospital.. It was the last thing on my mind!
As usual i end my posts with the beautiful gifts from the amazing people who i am surrounded by..
I received these gifts before i was admitted into hospital, I wrote a post on the morning of Eid but fell unwell before i could post it..
Thank you to my family, friends, community, colleagues and everyone out there for all the support.. I’m sorry for taking ages to reply to messages.. Thank you for everything.. Thank you to those who went on pilgrimage and remembered me in their prayers..
Avan.. You feature in every post because you really are the gift that keeps on giving.. I’ve given up on you! You know how much i love you.. Thank you for everything.. Your support on a daily basis.. Thanks for always being there.. Love this beautiful gift.. How pretty and cute!!! Thank you
My dear cousin Roya.. Thank you for inspiring me on a daily basis.. The journey you have been through and your strength always give me hope that there is light at the end of the tunnel.. I wake up to your positive messages every morning.. You are truly amazing in many ways.. Thank you so much for this book which i am obsessed with! Love it! I would highly recommend it..
Beautiful gifts from colleagues or more like ‘brothers’ at work.. I am so blessed to have your support and touched by your kindness.. Thank you for everything.. I pray Allah gives you everything you pray for.. Thank you from my heart!!
THANK YOU to everyone who was by me during my sickest moments.. Apologies i was unable to take photos of everything.. Especially all the chocolates!!! Most of these photos i took when i got home.. So I really apologise to everyone who came into hospital with something.. I love you all so much!!!
My best friends Zahra and Neam.. Thank you..My first visitors who were by my side as soon as they heard.. Thank you for the chocolates too!! Zahra you kept coming after work to be by my side despite working all the way in central London.. True friends are rare these days and you know your one of them.. My best friend Jumanah.. You may have been in another country but I felt your presence minute by minute.. Thank you for always being there.. And the rest of my friends who couldn’t make it.. I love u all
My aunties and cousins.. I love you all.. Every single one of you.. Despite the difficulties you somehow managed to come and see me.. I love you all.. Khaleh May thank you for cooking for me!!!
Habibti Leen.. Thank you so much for popping by to see me, i know how busy it gets at work.. You are truly so kind.. You really didnt need to!! You and your family have just been amazing.. Thank you!!!
These flowers were mixed up and put into one vase!! I’m pretty sure they were from my inlaws and Aya.. I love you!! I’m so sorry because they weren’t allowed into my room i can only guess! Thank you so much they are gorgeous!!!! Yellow all the way!! Big shout out to my inlaws whose holiday i think i ruined by falling ill.. Thank you for being by me.. I love you..
My little princess!! I missed you so much.. Children were not allowed on the haematology ward which meant I couldn’t see my niece for a week!
My beautiful cousins.. I love you so much.. Thank you for the chocolates and card.. Thank you for visiting me multiple times despite having a 3 month old baby!!! Your kindness and love is overwhelming..
Aseel and Samir.. You are more than family.. You know how much i love you both so dearly.. Thank you for coming all the way after work to be by my side.. Thank you so much for the chocolates which everyone gobbled up!!
Avaaaaaaaan… My wifey.. Thank you for everything.. Gifts aside.. Thank you for spending as much of your shift with me.. I know work is busy but you somehow found a way to keep coming back.. Your magazines helped me stay occupied in my prison cell.. And when i got discharged i cam home to the most beautiful and unique sweet flower tree.. Whatever it’s called.. It is too pretty to touch!! I love you x forever
My cousin/sister/childhood buddy.. Sora.. Firstly i’m so sorry for the crap photo.. I wish i asked someone to take a proper photo.. Thank you for coming to see me despite having a little one.. I love you to bits.. Your Instagram post brought tears to me eyes.. I havn’t had a chance to reply yet.. I love you so much.. Thank you for visiting me! I’m sure you got chocolates too.. So thank you so much!!!
Habibti Khaleh Um Yasser and Zahra.. You guys are the sweetest ever!! Khaleh habibti your visit meant so much to me me thank you for being by my side.. This gift is so pretty!!!!!!!! And best of all its full of treats!! It put the biggest smile on my face.. Thank you from my heart.. The pictures speak louder.. Just absolutely beautiful.. I love you so much THANK YOU!!!!
Last but not least.. My fiance.. My world.. My rock.. I will get better.. For you and for myself.. I love you..
Praying for health, happiness and peace for everyone xxxxx