Hours away..

I am only hours away from my last ‘planned’ chemotherapy session.. Shortly i will get ready to go to the chemo suite.. Hopefully for the last time..

I say this is my last planned chemotherapy session because we are hoping that the PET scan i will have in the weeks to come will show that i have fully responded to the chemo and gone into remission.. 

The days leading up to today have been full of excitement, anticipation and fear.. When you feel so close to what potentially can be the end of a nightmare, you fear that anything small can delay you reaching that end goal. Any simple illness like a cold or a slightly raised temperature can delay my chemo session.. I can only compare it to running to catch a flight which your late for with a few minutes left till the gate closes (yeap i’ve been that crazy looking person with a hundred pieces of hand luggage running to board a plane which I’m about to miss because I spent too long in duty free.. Guilty!)..

I have decided to go into the chemo suite and treat it like it is my final time.. I truly believe in mind over matter.. If you are positive the outcome will be positive.. I have come too far to go back now.. My cancer nurse specialist told me a few days ago I shouldn’t “tempt fate”.. But i strongly believe that this is it.. Well that’s what i want to believe.. 

I have definitely reached that point of complete exhaustion and i’m pretty fed up.. I just want the simple things in life which have been missing for so many months.. I miss sleeping in one stretch.. Not waking up every couple of hours because of my night sweats and hot flushes (side effect of hormone injections).. I also miss showering without having to wrap my arm in cling film and a platic sleeve.. and i miss eating salads, biting into a chicken burger from the local takeaway, leaving the house to go somewhere other than the hospital and just so much more! 
I know i am probably getting ahead of myself but i will get better.. I will.. I know it.. I have to get better.. 

I absolutely hate chemotherapy.. They say with time it gets easier.. But for me it has been the total opposite.. The last two chemo sessions have been the most difficult.. It is humiliating being the only person in the chemo suite throwing up back to back for several hours.. It has been a struggle.. That is why i need to finish.. My body can’t take anymore it is worn out..

Right.. Time to get ready.. This will be my last time walking along those corridors.. Up that lift and into that chemo suite…

The coming weeks will be revealing.. But now let me end on a positive note as usual..
Big thanks to my beautiful cousin from Iraq who prayed for me at the holy shrines of Sayida Zainab and Sayida Ruqaya..

My wife for life Avan.. Thank you for these beautiful flowers.. I love you so so much!!

 

My cute little niece remembers always remembers to get me something when she is out shopping with her mum.. This weeks gift.. Love her so much


One of my amazing best friends Jichi got me this super cool Mary Berry baking book!!! Thanks to the great british bake off i’ve caught the baking bug.. But i havnt experimented much.. This book is what i needed to kick start me! Thank you so much!!!

Finally.. I thought i’d share some of the knitting i’ve done over the last few week.. How i keep myself busy!

Headbands for myself..



Snood/infinty scarf for my mum..


Chunky scarves for friends and family..



Sending you all lots of love and positive energy.. I have a tiny request for anyone who reads my blog and this post.. I have a friend whose baby daughter is very very sick and currently in intensive care fighting for her life.. Please please remember her in your prayers.. Thank you..

Cycle 5 of chemo complete: Bringing about change

With time i have learnt that writing doesnt come easily, especially to someone who isnt a writer.. To be able to write about something which is so repetitive is really dull.. but every now and again there is something that ‘clicks’ or inspires me to get behind the screen and start writing..

Today my inspiration comes from the US presidential election.. I am no political expert and this blog was never started to started to discuss politics but a little venting does no harm..Today we woke up to the devastating news that Trump won.. To be fair I can’t say its a complete shock.. I mean if the UK voted for Brexit why wouldn’t America vote Trump? The common theme is ‘change’.. But that isn’t always right… The feminist in me is deeply disappointed that Madame Vice President Hillary Clinton (said with a broken Americal accent) lost.. Love her or hate her she is a strong and powerful politician with a wealth of experience… some may argue that her hands are stained with the blood of innocent civilians who have died in wars led or funded by the American government.. But they say the devil you know is better than the one you don’t..  I desperately wanted a woman in the Oval office.. Trump says he will bring ‘change’ and “make America better”.. I say Michelle Obama for office is the change America needs!

Okay enough said about politics (i can ramble all day).. Sticking to the theme of ‘change’ i wanted to update the readers of my blog about the complaint i made regarding my awful experience as an inpatient on one of the wards i was on.. Ref: https://listentoyourbodysite.wordpress.com/2016/09/23/back-home-what-happened/

I wrote a fairly long and detailed email to the manager of the ward outlining my experience.. I decided i didn’t want to make a formal complaint (via PALs etc) but wrote this email as a letter of complaint from one colleague to another (the hospital i was treated in is were i am employed).. I made it clear from the offset that i was not after any apologises, nor did i want to attack any one individual… but i just simply wanted to make sure that changes would be made, so that no patient experiences what i went through. Aswell as raising my concerns, I mentioned what went well during my stay (there is always something positive about an experience)… I also highlighted how strongly i felt about healthcare proffession listening to their patients, something which fell short in my admission. The email  ended with a list of changes which I felt could be made to improve practice.

I recieved a swift response from the ward manager who was absolutely amazing.. She had dug up my medical notes and been through them in detail… she’d compared my version of events with what was recorded in my medical notes and found it matched (the mistakes that were made). She asked to speak to me over the phone to which i agreed, we had a very lengthy conversation, which ended with her promising that changes would made to improve practice.

Last week the ward manager contacted me again and explained how following my complaint the nurses on the ward have received extra training. The nurse involved in my care was confronted about the incident, subsequently she was asked to reflect on the incident, and has since received extra support and training. Furthermore the manager reassured me that she has highlighted to her staff the importance of listening to patients, and that further changes will be made to improve practice. 

I am absolutely delighted with the outcome and feel I have closure. Most importantly i am hopeful that no other patient will have to experience what i did. I strongly believe it is important to raise concerns, but in a constructive way, which would help bring positive changes.

Thankfully that chapter is closed.. Now to the medical news.. I have now completed my fifth  cycle of chemo hooray!!! Today i went in to hospital to see my consultant, i was told that the treatment for my blood clot has been extended from six weeks to three months.. That is daily injections for that long.. I am begining to find it more difficult to inject myself, with all the bruising my skin seems thicker.. Either that or the needles are blunt! But i can deal with it.. 

As for my chemo the plan is i will have 2 more shots followed by a PET scan in 6 weeks from now.. If the PET scan is good i wont need more chemo only close monitoring and further scans.. I can’t help but feel so incredibly excited at the prospect of not needing further chemo.. I have no idea what my scan will show but i am ever so hopeful and positive.. I am counting down the days till i have my scan.. I am so excited.. I am praying i can start 2017 without needing more chemo.. Among this overwhelming feeling of excitement mixed with anticipation is an element of fear.. But I try not to think of bad scenarios.. What I have come to realise during my journey so far is that what gets you through dark times is positive thinking..

I also saw Shirley today.. (https://listentoyourbodysite.wordpress.com/2016/07/07/shirley/) she has had 2 further operations to remove lumps of cancer.. She has now completed 8 cycles of chemo and is now waiting for a PET scan to see if her cancer has gone.. Lots of prayers that it has.. Love that woman!

I think iv waffled a lot today.. I begining to nod off whilst typing so i will head off to sleep.. But again I would like to thank everyone for the love and support, i feel blessed to have met so many new people on my journey so far.. i am humbled by those who read my blog and actually care about my story… I am truly blessed.. 

One of my beautiful best friends Sama surprised me with a box and of goodies!!! How incredible are they!! The advent calendar is the best gift idea for a woman.. I’m like a excited child opening each day (I’m using it as a count down for my remaining shots of chemo). THANK YOU SOOOOO MUCH SAMA.. Love you and  your cute family so much!!!? Forever grateful for everything.. Best gift is having you as my friend!!!



These beautiful flowers arrived yesterday and they have really brightened up the living room.. Just stunning.. Love love love them!!!! Sara K, Taybeh, Sara B.. I LOVE YOU GIRLS.. Thank you so much!!!! What a surprise!! Thank you for all the love and support!


My cousin Roya.. My knitting buddy.. My go to for anything.. THANK U SO MUCH for the round loom!! I have already used it and can’t wait to experiment more with it!! I should share some of my knitting ptojects here.. Thank you for being there everyday non stop support.. LOVE U!!!!!

Last but not least.. My bestfriends Jumanah and Zahra.. Don’t know what I would do without you girls!!! Thank you for everything you do.. Honestly nothing i will say is enough.. I have the most amazing group of bestfriends.. I am so lucky.. Thank you for the time you have spent by my side.. STOP showering me with gifts!!! I honestly cant keep up!! LOVE U GIRLS SOOOOO MUCH.. Thank you for thinking as far ahead as when I recover and for getting me pampering gifts from now.. Thank u!!!!!.. Can’t wait to get better and use them!! Love u..


Ok i am actually falling asleep.. Goodnight.. Lots of love and positive energy.. God bless you all xxxxxx

Losing my hair 

The further i get in my treatment the more reluctant i am to write, with so much going on it seems easier to distract myself with other things which take my mind off reality.. But here i am.. Trying to document my journey and be open like i promised I would be from day one..

I started writing this post.. Then deleted it.. Then wrote it again.. Then deleted it.. And this went on for several days.. I will only write when i am ready to do so.. and today felt right..

As i look out of my bedroom window which overlooks our garden i see leaves scattered everywhere.. And when i’m sat beside my mum in the car as we make our journey to hospital several times a week I can’t help but stare at how the trees we pass each time are changing.. They are slowly becoming bare.. But yet they still look beautiful and stand proud.. Autumn has always been one of my favourite seasons.. “Fall” as its known in North America is the season of change.. And change is something i have seen a lot of in the last few months.. But whatever change may be it will always bring something new with it.. Something good… Something good if you look at it in a different way..

I want to share with you my experience of losing my hair.. Something i’ve wanted to write about for a while but struggled with…

When i first got diagnosed with cancer the idea of having cancer or being unwell never upset as much as the idea of loosing my hair because of chemotherapy.. Something I have touched on in my previous posts.. 
During those early days when i was still well enough to go out I remember visiting Ikea with my mum.. I can’t remember why we went Ikea but I remember as we were about to leave we spotted some beautiful Bonsai trees and decided to take two home with us..

This is my favourite one.. It’s trunk looks like two people embracing… Well thats how i see it.. Anyway i think it’s beautiful..


When i got home i read the instructions of how to care for them and on the information leaflet it said how we should expect the trees to loose some of their leaves as this happens when they are in a unfamiliar environment.. 

With time my Bonsai trees began to loose their leaves.. and i was begining to loose my hair.. It may sound silly, but i find comfort when looking at these trees, it’s as if they understand my pain and loss..

Before i started chemotherapy I decided to cut my hair short as the progression from short hair to no hair would be easier.. Initially I thought there would come a point when I would eventually shave my hair off.. I have read so much about cancer patients on chemotherapy shaving their heads off before their hair falls out. They say they feel that way they are ‘taking control’ and choosing to loose their hair before it falls out.. But as time went by I realised I couldn’t shave my hair off.. To me that wouldn’t be taking control but instead i saw it as inflicting pain on myself.. I had accepted that I would loose my hair, but i was going to enjoy every strand of it till the last minute.. Even if i only had one strand left.. 

I first noticed my hair begining to fall out about three weeks into my treatment.. To begin with it was just chunks of hair on my hairbrush.. And then it progressed to hair falling out in the shower.. I remember crying uncontrollably in the shower as strands of hair fell out clogging the drain.. Washing my hair was a painful process which only got worse with time.. Chemotherapy not only made my hair fall out but it also made my hair much drier and its texture changed.. It became so rough as if it had been bleached.. So i used to wash my hair with a conditioner only, i was extra gentle when rubbing it in so that i wouldnt cause more hair to fall out..

With time my hair loss began to increase.. I would wake up in the morning with my pillow covered with hair – that is no exaggeration.. To begin with i used to really struggle emotionally with this.. I would cry so much.. And thats coming from someone who really tries to stay strong.. But trust me its not easy having to gather chunks of hair off your pillow and watch over your bin as it fills up with hair.. I also began to leave trails of hair in the house.. It would fall wherever i’d go.. Wherever i’d sit.. Even if i was to hug my family i’d leave a touch of my hair on their clothes.. A total nuisance.. All i can say is my mum has been so patient.. I think normally she would have freaked out, but she has been amazing! I have been told over and over again by so many people around me to shave my hair off and end the pain of seeing my hair fall out.. I have always refused.. And that won’t change!

When my hair fallout was at its worse i stopped brushing my hair (no shame).. I also began to wear a band on my head to hide the bald patches.. I have only worn my wig once.. Unfortunately however well made a wig is it is impossible to tolerate it with the hot flushes and sweats i get.. A total receipe for disaster..  

One thing which i’ve experienced with my hair falling out which I didn’t expect is that not only has my scalp been sore at times.. but there is this pain which i get which i can only describe as being exactly the same as someone pulling your hair really tightly.. Now don’t get me wrong i am not suggesting i have been in cat fights and had my hair pulled out!! ..but if you’ve had your hair tugged hard you will know what i mean (especially by babies who pull on everything they see).

Hair loss due to chemotherapy isn’t exclusive to hair on your head.. You loose hair everywhere on your body! I have lost most of my eyebrows and eyelashes.. I definitely feel i now fit the stereotypical image of a cancer patient! 

I feel very lucky that i wear a headscarf because when i go out no one knows i have not hair.. Not that i am in anyway ashamed of having no hair. It’s not always that bad loosing your hair, i mean it’s far from ideal but i bald head can be covered with a wig.. No eyebrows can be fixed by drawing in some eyebrows with makeup (which I don’t do because i’m just not bothered and my makeup skills are non existent).. And no eyelashes can be fixed by wearing fake eyelashes.. 

I think coping with my hair loss has definitely got better with time.. My only real struggle is knowing that my wedding will not go ahead until i grow enough hair back.. I do not want to get married wearing a wig.. I want to look back at my wedding photos knowing that i had my real hair.. I don’t want my wedding photos to remind me of my battle with cancer.. I pray that my chemotherapy finishes as soon as possible and that i will never need chemo again and that my hair grows back quickly..

It really helps when you have a supportive network.. My family and fiance have wanted to shave their heads off in solidarity but that’s something i have refused time and time again.. People shaving their heads off does not make me feel better, if anything it makes me feel worse.. Having said that i have so much respect for those who shave/cut their hair so they can donate it for wigs to be made for cancer patients.. My beautiful cousin Roya cut her hair off and donated her hair, something she does time and time again.. A true hero..


I am happy with the very few barely there strands of hair left of my scalp and i am glad i never shaved them off.. They are a part of me which is beautiful.. Inevitably they will also fall out in the coming days.. But that is okay.. 
I am comforted by my Bonsai trees which are begining to look just as bald.. But they are still beautiful.. Bald is the new beautiful..

There is more to a tree than its leaves.. And there is more to me than my hair!

Autumn is the perfect example of how ‘loss’ and ‘fall’ can be beautiful..the season of change.. The start of something new and better.. And that is how i am seeing my hair loss.. I am excited to get get better and recover.. I can’t wait to see how my new hair will be like.. They say it can grow back differently.. For example those with straight hair can grow back curly hair or the opposite.. I have even read that your hair can grow back a different colour!! 

I’ve talked a lot about hair and hair loss.. Before i move on i want to send a big shout out to everyone out there suffering with hairloss.. Especially those with alopecia and other conditions which result in hair loss.. You are all truly brave.. My hair loss may only be temporary.. But you are the true warriors.. So much love and respect for you..  

Quick medical update as i have not posted in agesssss!! I have my next chemotherapy (cycle 5b) coming up on Monday (not looking forward to it).. Unfortunately over the last couple of weeks i have developed signs which suggest some possible damage to the nerves to my hands (peripheral neuropathy), i get a lot of ‘pins and needles’ and the sensation in my finger tips has changed.. I can only describe it as if i have burnt my finger tips on a hot stove.. There were times when my hands felt too numb to use pick up and use my phone properly.. This unfortunately is a side effect of my chemotherapy and therefore my doctor has reduced the dose of one of my chemotherapy drugs by 50%.. The risks of continuing on the full dose of chemo outweigh the benefits. Thankfully the numbness in my hands has slightly improved and hopefully when chemo is stopped it will improve further.

As for my blood clot, i need at least 6 weeks of daily injections to thin my blood.. my belly is bruised from these injections but oh well i have no choice but to keep injecting.. As for my immunity it remains low, therefore i am still on antibiotics and on injections to boost my immunity (more belly soreness).. I think thats all i can remember for now..
Thank you to everyone who has shown me so much love and support.. I read every message and email even if im slow to reply.. I am sorry..

Ending on a positive note always!! 
Thank you Manal and Sara for this beautiful gift and cute card!!!! Total surprise when it came through the post.. You girls are so sweet!! Thank you from my heart.. Sending you both and your family lots of love and hugs.. I hope to get better soon and see you!




I also received this through the post.. I don’t know who the sender is.. But this gift which includes a mini prayer mat, turbah and quran means so much to me.. I want to thank whoever sent it so much.. You will forever be in my prayers.. Inshallah when i get better i will do ziyareh and pray for you.. Sending you my love..


Last but not least.. My wifey for life Avan.. Thank you for always being by my side.. For waiting with me for hours in hospital.. For being there every step of the way.. If there is kne thing i have learnt from my illness is how blessed i am because i have people like you in my life.. Your gifts are always fun and unique and put a smile on everyone’s face (my niece amoora loved the calendar.. I have not seen it since..).. Love u SO MUCH

Lots of love to everyone following my journey.. Thank you so much for the support.. The road to recovery is not far.. Always be positive and smile.. Be bald (not literally).. Be beautiful xxx

New PICC line.. And a blood clot..

Finally today i had a new PICC line put in!!!! Unfortunately its not all good news..

I should of had a PICC line put in yesterday by the vascular team (doctors who specialise in blood vessels).. I went into hospital at 12pm to first have some blood tests.. I then waited till 5pm.. Only to be told that they wont be able to do it as they are running late and there is a patient before me who is still in the operating theatre… Not fair? Not ideal? Oh well.. It really isn’t anyones fault.. These things happen and you’ve just got to take it on the chin.. I was told to come back in the morning at 9am to have the PICC line put in.. Not too bad..right?

Before i move on.. Can i just say i met some amazing ladies during the time i spent waiting for the PICC line.. Other patients who had come for different procedures.. I feel so blessed that somehow wherever i go on my journey i am getting the chance to meet some lovely lovely people who really leave a mark.. These ladies shared their stories with me of their health problems and also the stories of people they know with cancer.. They were so so lovely.. They showed me so much love, support and kindness.. Lots of encouragement and advice like “drink beetroot juice”.. One of the ladies is so special.. She has run multiple marathon for good causes and really is so giving.. I feel privileged to have met such inspiring strong women.. There really are truly beautiful humans in this world!

Back to my story.. So i was told to come back the next morning.. Which I thought isnt too bad.. And to be honest i am really thankful my PICC line could still go ahead as my blood tests yesterday showed my white blood cell count (neutrophils – which fight against infections) had dropped to 0.3 – not great – but i am on injections for my immunity and on antibiotics to try and prevent infections.. 

So this morning off i went back into hospital – i turned up at 9am as i was told.. Unfortunately there was no doctor to see me.. I was told the vascular doctors are busy doing a ward round and i should wait.. So i waited and waited and waited.. and then got bored (there were no friendly patients to chat to like yesterday).. So me and my mum decided to sit in the hospitals costa for a change in environment.. We then got bored and decided to head back to the ward to see of there is any news.. 

On the way back in the corridor i bumped into a nurse who specialises in training doctors and nurses how to put PICC lines in (she works for a external company and not my hospital – i met her when my first PICC line was put in).. So i told her how my first PICC line became infected and how i was waiting for the vascular team to put a line in for me but they are too busy.. So she kindly offered to put it in!! I was absolutely delighted because the vascular team had still not got back and to be honest i was fed up of waiting!

This nurse is excellent with so many years of experience – i wish she worked for my hospital! Before my PICC line was put in she looked at my right arm which had my original PICC line – she pointed out that the colour of my arm appeared different and the veins higher up in my arm were very prominent as were the veins in the top part of my chest – she immediately said “i am sure you have thrombosis in a vein supplying your arm” (a blood clot).. She immediately picked up the phone and called the vascular registrar.. He came and examined me and arranged for a “doppler scan” – basically an ultrasound which looks at the flow of blood in your blood vessels..

Unfortunately as you may have gathered already (from the title! Im not expecting anyone to interpret the image above..) the scan confirmed i have a blood clot partially blocking one of the veins which goes to my arm..

The clot is where the circle on this image is – in my subclavian vein (image taken from http://img.medscapestatic.com/pi/meds/ckb/00/39400tn.jpg)

So.. Why do i have a clot? Unfortunately cancer increases the chance of blood clots forming as your blood is more sticky.. Also having a PICC line puts you at higher risk.. I developed this clot where my old PICC line was…

Thankfully i am well.. I am alive.. Its just another hiccup but that’s life! It’s never boring!

I now have to inject myself daily in my belly with a medication which thins the blood.. no big deal..

If your wondering why I hadn’t picked up on this myself sooner (i am a doctor – surely I should have?).. The honest truth is with so much going on i don’t have the mind set.. It may not be a good enough excuse – but I really do not look up at my upper arms closely – i have stopped looking at my face in the mirror let alone noticing changes in my upper arm.. Listening to the body isn’t enough.. I guess ‘listen and look’…

Anyway…

I have a PICC line!! Hopefully my next chemo this Friday will be pain free..

Tomorrow i’m back in hospital for more blood tests and to see my consultant and Friday is my chemo..

That’s all the medical things..

Tonight is the night of ‘Ashura’ (whoishussain.org)

This is the first time i am unable to attend the mosque on this holy night.. It really breaks my heart.. Even when my dad was unwell following his accident i still managed to attend.. Anyway.. I ask all those attending the mosque tonight and tomorrow morning to remember me in their prayers.. I pray next year i am well enough to attend in person.. But i am still thankful and very blessed that i am able to watch the live coverage on TV..

Sending you all lots of positive energy and prayers this night

(I apologise for being slow at replying to messages – especially private ones)

XxxX

4th cycle of chemo complete.. And more..

Two days ago i had my 8th session of chemotherapy – i have now completed 4 cycles! 

Unfortunately as I don’t have a PICC line at present i had to endure the pain of chemo through my arm veins.. 

Luckily the new head of the chemotherapy suite in my hospital is a colleague i had worked with in the past – she was previously a palliative care nurse – someone who has worked many years with patients who are at their worst point (dying patients), so she has a level of empathy that really makes her stand apart.. She spent some time with me asking me how things were going, she noticed i’d become more pale and as chemo does it changes your appearance. I explained to her my PICC line had to be removed due to the infection i had.. She understands the amount of pain my type of chemo can cause to the arm, and has promised to try her best to find a vascular surgeon (a surgeon who deals with blood vessels) who may be able to put a new PICC line in for me – the haematology nurse who is trained to put PICC lines in is away for three weeks!

Other than that nothing is really new with my chemo.. As my consultant explained to me at my latest clinic appointment with each session the chemotherapy builds up in your body so expect your symptoms to get worse.. I think no more needs to be added..

In other matters – today marks the one year anniversary of my engagement – this time last year I thought my life was heading in a particular direction – i didnt have too long to finish my GP training – i had set a month for my wedding and so much more. Four days before i recieved my diagnosis i had been to see the venue I wanted my wedding in.. 

Every time a attend a clinic appointment to see my consultant i ask when can i start planning my wedding, in my latest clinic appointment my consultant advised that i should hold off any planning for now especially after my recent admission into hospital with an infection. She advised that wedding planning is very stressful and now is not the right time, ideally i should wait at least a month or two after completing my treatment when i am well enough to deal with such stress. I am very organised and i hate leaving everything till the last minute… i love having as much time.. but one thing my illness has taught me is at times i need to step back… listen to my body.. and do what is best for me. I remember my consultants words.. she is absolutely lovely, she kept saying stop worrying about planning your wedding.. You need to get better.. You need to be well to plan the day of your dreams.. Don’t pressurise yourself.. Hopefully you will get better and you will see that day. 

I have taken that advice on board and so i’m trying to focus on getting through these days.. But i just can’t help looking through my engagement photos and shedding some tears.. I’ve also learnt from my illness it is not a weakness to release your emotions, being it sadness or anger.. it’s only human.. However much i wanted today to be a happy day, i just struggle to compare the photos of myself in my engagement to the person i no longer recongnise when looking in my mirror.. I know I will get better.. Its a matter of time.. I am positive this will soon be a distant memory.. But i still have to face the reality of what is the present…

I’d like to share a few photos of my engagement.. our traditional iranian spread (sofrat aghd).. I had not too long to plan my engagement which I found so frustrating as i like having time.. But luckily i had the help of my amazing sister who convienantly is a wedding planning (Boutique of surprises – http://www.boutiqueofsurprises.co.uk) – more photos can be found on her social media accounts.

Pictures of the traditional iranian spread we did in a marquee in our garden

Anyway.. Thats just a small glimpse into my life one year ago.. I am so thankful for all the good days i have had and the good ones which are to come.. I believe we should live every day to the fullest and take each day as it comes.. At the same time i have learnt that however difficult a person may find their situation it really is nothing in comparison to what others in the world go through.. Absolutely nothing.. Not even a drop in the ocean..

Tonight is the first night of muharram which is the first day of the Muslim calendar. Wishing all Muslims a blessed year. It also marks the first night of commemoration of the social revolution of the Prophet’s grandson Hussain who made the ultimate sacrifice for social justice in the face of corruption and tyranny. He gave everything he had, including his life, for justice and humanity (https://whoishussain.org/).. What he and his family went through inspires me and gives me the strength to face my own mini battle with my health.

I will end my post here as it has been emotionally draining especially at a time when my energy level is not at its best.. But as with every post i like to share the love and support of those amazing people i am gifted with – my friends and family..

A massive thank you to three special friends.. Fatima, Howra and Zainab.. Three beautiful ladies who sent me these beautiful gifts.. I genuinely can not thank you enough.. I was totally taken aback with your generosity.. And you definitely got my taste spot on.. I really cant believe you got me exactly what i wanted to order!!!! THANK YOU SO SO MUCH YOU LADIES ARE AMAZING I LOVE YOU!!!!!!!!!!!!!!!

My beautiful best friend Iman and her cute little family sent me this pretty bouquet.. How adorable is the balloon!! THANK YOU!!!!!! Love you lots!!

My best friend Jichi.. Always thoughtful!!! I currently have gone back to knitting as a way to fill my spare time.. She got me these beautiful bamboo needles and cover!! How useful!! THANK YOU SO MUCH!!!

Finally.. Whilst on the topic of knitting.. My sister and niece completed my knitting kit today with their pretty gifts!! Now I really have everything i need.. You guys are just the best!!! Also my beloved mum who kick started my new knitting kit with everything she’s got – family really is everything!!

Sending you all love and Prayers XxxxX

Macmillan coffee morning 

Firstly a quick health update..

This week i have had further blood tests and i saw my consultant who advised we need to restart my chemotherapy and delay it no further  (my last chemo session was 3 weeks ago).

Unfortunately due to limited resources i will not be able to have a new PICC line put in, until the nurse who does the procedure comes back from leave, in 3 weeks time.. That means i have to have 2 sessions of chemotherapy through my small arm veins and tolerate the burning pain that comes with it.. I am very worried and anxious about having to experience that excruciating pain again.. But at the same time i am pleased my chemo is restarting so i can get back on the track to recovery!

Today i will have my next chemotherapy – making it my 8th session.. I can finally start crossing days off on my calendar again.. 

I am really bothered that this month (blood cancer awareness month) has come to an end and I havnt posted about blood cancer itself – or at least Hodgkins lymphoma (my cancer).. Each time i start writing i close the screen and save it as a draft.. Not because i’m lazy, but i dont like focussing on my cancer, i prefer to focus on the light at the end of the tunnel.. Maybe part of me is in some form of denial.. I know I could do so much more to raise awareness and to give back.. Everyone is different and everyone has a different journey.. For me i have shared my personal journey so far and relied heavily on the reader to go out and read about my cancer.. something I’m not particularly proud of.. When i can find the mindset i will finish the posts that are piling up in my draft folder!

Anyway.. Enough waffling and lets talk about..


MACMILLAN COFFEE MORNING 

Today is Macmillan coffee morning!!! Please get involved and donate to this amazing cause.. Macmillan is one of the best cancer charities out there.. I know about them not just because I am a patient but because I have worked with them as a doctor, I have seen hands on the amount of support they give to cancer patients.. They are true heros!

Visit the Macmillan coffee morning website for more information and to donate:

https://coffee.macmillan.org.uk/

The Macmillan coffee morning website is great it tells you how you can donate and where you can find a coffee morning near you..

https://coffee.macmillan.org.uk/

Disclaimer: the above images are screenshots from the Macmillan coffee morning website.. I mean I’m sure that’s pretty obvious.. (Do not want to deal with anyone complaining about copyright infringement!)

Before i get ready to go into hospital.. I have to share some positivity.. 

I am fortunate enough to have not needed any support from Macmillan as i am surrounded by so many loving people you have been with me from day one..

Time for some more thank yous!

I received this stunning bouquet from my fiancé friend and his wife.. Ali and Dalya THANK YOU SO MUCH.. This was a total surprise!!! I love this bouquet its so pretty!! You guys are so sweet.. I can’t wait to get better and meet you properly!! Thank you so much.. Lots of love from me and Ali to you both xxxxx


WHEN YOU BEST FRIEND FINALLY COMES BACK FROM KUWAIT!!!!! Oh.. And she obviously always finds a way to spoil you… JUMANAH i love you!!!!! Arabic magazines because i’ve read all the english ones.. The most tasty date sweet (klecha) hand made and wrapped by her mum all the way from kuwait!!! Finally a beautiful scent and candle from Jo Malone (we all need a bit of Jo Malone in our life!!).. Thank you!!!!!

Then this came through the post.. From two special ladies.. My sisters close friends.. Maryam Allawi and Sukaina Kadhum.. I hear a lot a lot a lot about you girls.. I think we briefly met the night before my engagement party.. i really was surprised when i found out this gift is from you both.. YOU ARE SO SWEET!!!! A personalised notebook and matching pen… 100% my taste… This has to be my favourite notebook and pen combo… Thank you so much for your kindness! Vian is lucky to have such loyal friends lovd you lots xxxxxxx

My beautiful cousin Sora just came back from Rome and somehow still managed to find time to send me this stunning bouquet of lillies with the prettiest vase.. I can’t wait for the lillies to open up!! THANK YOU SO MUCH!!!!!!!!! Love u lots and lots xxxxxxxx

So yes i do have the bestest best friends on this planet.. My best friend Jichi can i just say i havnt shown all your gifts (the ones you got when i first fell ill so big apologies)… Firstly thank you for this hilarious book full of witty english comedy.. A easy read.. Especially when i have no energy!! THANK U SO MUCH for the beautiful bamboo knitting needles (i love knitting) I started using them immediately!!! Oh and the cover they come in is so cute!! LOVE YOU SO MUCH.. 


Finally a massive thank you to my little sisters friend FK for the delicious sweets from Jordan! They were eaten before i managed to take a photo!

On that note i end this post with lots of love and positive energy..

I better get up and get ready for chemo..

XxxxxxX

Back Home – what happened..

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.. 


Okay so my nurse during that day may have been busy.. So when it was time for the nurses to swap shifts i was looking forward to a new nurse who hopefully would be better…

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 feel i have learnt a lot by being a inpatient.. I really could spend hours talking about my experience.. I saw good and bad care.. Overall i am thankful to be alive..

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..

Cards..

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!!!!


FINALLY (numb fingers)

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

Admission to hospital

Eid Mubarak to all celebrating, I hope you and your family are well.

My sister has been admitted into hospital today until further notice due to a severe infection. Unfortunately this means she will not be posting on her blog. 

Keep her and all those who aren’t well in your prayers tonight. Thank you..

For now, take care

V

Reaching the half way mark – cycle 3 over

Wow its been a long time.. Honest truth is i find it harder to get behind the screen and keep writing with each day.. I’d much rather avoid anything that reminds me of how sick i feel.. But after a few nudges from those close to me (especially my cousin Roya in Canada!) i’m back.. Also September is blood cancer awareness month.. So here i am keeping this blog alive..

So I can finally say I have reached the half way mark for my current chemo treatment! Last week i had the second half of my third cycle of chemo.. 

As happy as i am that i have reached this milestone, the reality is i am beyond exhausted as with each day my body is getting weaker. Chemo sessions are becoming more tough, with extreme fatigue and unforgiving nausea there are times when i feel that my treatment is more likely to kill me than my cancer.

The only way i can describe my fatigue is like my body’s battery is  on 20% or less.. There is only so much i can do before crashing.. But trust me i try to use that 20% to the full and be as normal as i can and enjoy every moment of it..

My immune system has been low this week – my white cell count has dropped to a seriously low level (i’m neutropenic again), which has meant i have been back on the injection (GCSF) to help boost my immunity.. 

I have also had a slight issue with my PICC line – it was briefly blocked – oh my lord that flash thought of having the line removed and a new one put in, or even worse having to go through the pain of chemo going through a small vein, not fun! Thankfully i was given a injection which unblocked the line – the line was likely blocked due to a blood clot.. So that drama was averted wuhooo

I’ve been backwards and forwards to the hospital this week – I saw my consultant and we had a chat about my nausea and vomiting – because thats the hot topic at the moment – no seriously she has changed my medication around in hope that my nausea will improve! 

So thats my brief health updated – in other news, my inlaws are in town, they have come over from Kuwait to visit! This is the first time i see them since falling ill so i have missed them a lot and it’s lovely knowing they are close by. Unfortunately because my immunity hasn’t been up to scratch i haven’t been able to go out with them as much as i would want. I hope this weekend i get to spend more time with them before my next chemo session..

Hmmmm anyway… I hope to post about my hairloss and a few other topics – maybe be more frank.. I mean it’s blood cancer awareness month, so probably the best time to open up more!

Thank you to those who continue to read my blog enteries and who are following my journey.. Thank you to everyone who has shown me so much support.. You are the reason why this blog is still open..
Lots of love to my inlaws for everything.. The support and love they have shown me is just beyond words.. They are truly family to me..  here are some lovely sweets from them.. How pretty???


LOVE LOVE LOVEEEEEE this girl.. Some friends you know are for keeps.. I am so happy I can call you my friend.. Thank you for all the support and love.. You are beyond beautiful.. inside and out.. I love you to bits.. Thank you Amna!!!!!



I was so surprised to recieve this beautiful card from my relatives in Wales!!!! So so touched!! Lots and lots of love..

Last but not lease.. My beautiful best friends.. They are the gift that keeps on giving.. Nothing i say and do will be enough.. Jumanah and Zahra how thoughtful of you??? Eye lashes for a girl whose lost quite a few lashes!!! How pretty are these eye lashes, too pretty to use, love them!!!!  Avan i loved the eye shadows soooo much i have been entertaining myself with them (i do silly make up tutorials on snap chat for my best friends – total mess – just for a laught) absolutely love them!!! Thank you guys.. Now stop spoiling me!!!! Love you 


Sending you all lots of love and positivity!! Please spread the word about blood cancer and raise awareness this month!