Tag: health

Hey everyone! Its been a while.. it feels like a lifetime ago since I last posted.. i felt inclined to sneak back into my blog to share some news.. it always felt my “journey” never really ended.. maybe it did on my blog.. but never in me.. as one of my consultants once said.. the hard challenge begins when everything seems to end..

I’m not sure how much i shared on this blog because I never read my posts back (hence all the spelling and grammatical errors).. i wrote in real time.. this post is a bit different as its news sharing.. and a bit of a look back at the struggles of the last few years.. an insight on how thing’s really were.. since leaving this blog on pause my instagram took off.. but everyone knows instagram is “snippets of what you choose to show”.. it’s not the real thing..

First to the big news.. earlier this year.. in March of 2022.. i gave birth to my little miracle.. my precious baby girl.. I always believed in miracles.. but experiencing one is on a completely different level.. how i got there.. i mean the fertility journey of a menopausal woman.. thats what i want to share..

Why is she a miracle i hear you ask? As I may or may have not mentioned my cancer treatment has left me with “premature ovarian failure”.. basically in the menopause! And no unfortunately its not reversible.. this is it.. it’s permanent damage to my ovaries.. meaning I am infertile.. i am on HRT (hormone replacement therapy) and I have been under the gynaecology team pretty much since I was initially diagnosed.. but they became more heavily involved around 2017 when I had the more intense cancer treatment..

I know i tend to talk a lot and go off on tangents.. but please bare with me.. its been a while since i wrote and i have so much bottled i up.. so much that i feel is important to share.. I can’t I mean I don’t know how to cut corners.. so i may need to split this up into more than one post? Let’s see..

The menopause.. yes it means i am infertile.. on medication daily till at least the age of 50.. but thats not just it.. the menopause is like this box of unwanted gifts which keeps on giving.. the menopause left me with pains in my bones especially my legs at night.. so I had s scan which showed i have osteoporosis (bone thinning).. why? Well because oestrogen (the female hormone which women lack in the menopause) protects the bones.. so basically I had my medication increased to help my bones.. thankfully its worked.. bone pains gone.. but the menopause does so much more.. night sweats, hot flushes, brain fog.. the list goes on.. there is only so much that my medication can be increased to manage my symptoms.. thats because i am risk of blood clots if I’m given higher doses.. (i had blood clots twice during my cancer journey.. so now my blood clots doctor – thrombosis haematologist is extra cautious)..

So thats a brief outline about my life with the menopause which I am managing quite well.. I would like to one day run a menopause clinic.. having a doctor who knows what the menopause truly is as she’s living it makes sense right?..

Anyway.. i may be managing well with the physical complications of the menopause.. but being infertile… completely different struggle…

Here are the words of one my consultants to me when my cancer came back in 2017:

“The best decision you ever made in your life was to listen to your mum”.. oh and was my beautiful mum right..

In 2016 when my cancer was initially diagnosed I was told that the treatment may leave me with fertility problems.. this is usually the case for people who fail first-line treatment and need strong chemotherapy.. I was given the choice to freeze my eggs before starting treatment.. this was a dilemma and a really difficult decision to come to.. simply put.. freezing my eggs would mean my chemotherapy treatment would have to be delayed.. which means the cancer could get worse.. so I wasn’t keen.. to be honest most my close ones were not so keen either.. however my dear mother put her foot down and insisted I freeze my eggs.. she kept saying what if you need further treatment.. what if… she kept pushing me to agree and freeze my eggs.. and i listened to her…

Fast forward.. my cancer returns.. i need aggressive treatment.. i am left infertile… “the best decision i ever made in my life was to listen to my mum”..

So you are thinking.. she froze her eggs and had a baby? In summary yes.. but getting there.. a rollercoaster of a journey.. one full of desperation and pain.. enveloped in hope, faith and belief..

I documented my journey in my phone notes.. hours of reflection.. unfortunately most of which got deleted.. but i do have very few notes which survived.. i will share them with you… they give a small glimpse into my journey..

I think i will end this post here with this entry i wrote in 2019.. i will be back to share more details.. but for now..

Sending you lots of love and positive energy

Milad x

Those who have read my previous blog post will know that I am now awaiting to have a stem cell transplant (SCT)… this process kicked off on the 5th of November… remember remember the 5th of November!

It has now been over 72 hours since i had the chemotherapy drug ‘cyclophosphamide’, the first 24 hours were not as bad as I had expected .. but then yesterday I woke up feeling swollen and bruised, my face and upper body in particular felt battered. I have experienced this with chemotherapy drugs before.. Its just one of those things.. I know its just a matter of patience and soon ill feel better…

This may seem very random, but before i continue with this post I wanted to include some quick facts about stem cells and the transplant process so my upcoming posts make more sense… I really apologise if this feels like a biology lecture.. ill try to keep it short and simple..

What are stem cells?

Stem cells are cells which are made in the bone marrow, they are unique in that they have the ability to change and grow into many different types of specialised cells… such as cells for your liver, your skin.. you name it… but most importantly for patients like me, stem cells can develop into new healthy blood cells.

(Image found on google, link: https://www.cryo-cell.com/cord-blood/about-stem-cells)

What is a Stem cell transplant? Is it the same as a Bone marrow transplant?

Both stem cell transplants and bone marrow transplants involve taking stem cells and transplanting them into a patient who is unwell like myself, to give their body a chance to make new healthy cells. The difference between the names is simply down to how these stem cells are collected… a stem cell transplant involves collecting the cells from the blood stream, whilst with a bone marrow transplant the cells are collected directly from the bone marrow (much less common these days).

What are the different types of stem cell/Bone marrow transplants?

There are two types:

  • Autologous (stem cells taken from the patient themselves) –> what im having
  • Allogenic (stem cells taken from a donor e.g. Sibling, relative or someone on the bone marrow register)

What type of transplant is chosen depends on multiple factors, in some cases the only option is to use cells from a donor (allogenic). In my case based on my age and my scans, my doctors advised that using my own cells has a lower risk of death (as using someone else’s cells means a higher chance of rejection and long term complications).

It probably sounds odd that my doctors would carry out a transplant using my own stem cells… well as stem cells haven’t yet divided or changed, they haven’t had the chance to become cancerous (cancer cells form when a healthy cell begins to divide abnormally).

My doctors want to give me high dose chemotherapy to kill off any lingering cancer cells, but in doing so my bone marrow and immune system will be damaged. By taking my stem cells and freezing them beforehand, the cells can then be transfused back into my blood after I have been given the high dose chemo… hopefully these stem cells will then move back into my bone marrow and start making new blood cells.

(Sorry about the biology lesson.. i promise its over!)

I may have oversimplified my explanation and made it sound like the process is a walk in the park.. i am at the early stages. I don’t want to overwhelm myself or you…

So.. back to the 5th of November… the day my transplant process started..

This day was all about receiving a chemotherapy drug called Cyclophosphamide.. the job of this chemo drug is to “mobilise” my stem cells.. making them move out of my bone marrow and into my bloodstream, making it easier to collect the stem cells. The actual stem cell collection happens about 11 days later.

The Cyclophosphamide chemo is given over 2 hours as a IV drip.. but for an hour before i was given “pre medications” including anti sickness medication and steroids also through a drip. After the chemotherapy was over, i was then given tablets (‘Mesna’) to take to protect my bladder from bleeding, which is the main worrying side effect from this chemotherapy. I had to also take these tablets along with all the usual cocktail of drugs when i went home. Thankfully so far – no bleeding from the bladder!

Having had so many treatments I have pretty much become accustomed to all the side effects and dramas that come as a by product.. but what will always be difficult for me to deal with his hair loss.. i had just managed to grow enough hair to cover my scalp.. and i had began using my baby hairbrush to smooth down those fine hairs.. i had began looking in the mirror again, seeing glimpses of my old self… and now here i am again… beginning to loose my hair again.. cyclophosphamide makes your hair fall out, and the upcoming high dose chemotherapies ill receive will make me go completely bald again… it probably sounds ridiculous as i talk about hair loss so much.. i know my hair will grow back.. but it just doesn’t get easier.. this constant unasked-for change.. its like your identity keeps changing.. don’t get me wrong i love myself, God has blessed me with enough confidence to accept myself how i am… but for me its no longer about looking feminine and having long hair to brush and style.. its just simply wanting consistency.. not dealing with this constant cycle of change.. first world problems? Or maybe cancer patient problems..

Quick mention and thank you to my amazing lymphoma pharmacist and psychotherapist who have both worked to help me deal with all the side effects of chemotherapy.. there was a point when i would feel sick just entering the hospital (anticipatory nausea)… their continuous support and care has really made a difference.. there are really many amazing unsung heroes in the NHS..

The day after receiving cyclophosphamide chemotherapy I started taking GCSF injections (I have talked about them before – basically they stimulate the bone marrow to produce more cells… in the case of having a transplant.. the more cells which are produced the more there are to collect and freeze!).

Today is day 3 of taking these injections.. i have had them before so know what to expect.. I usually take them for a maximum of 5 days and they gave me really bad pain in my back and chest bone.. for the transplant purpose i need to take these injections for at a higher dose for 10 consecutive days!! I have been warned that the pain will be significantly worse.. my nurse called today to check I wasn’t in too much pain.. so far so good… watch this space for updates!!!

So whats up next? I will be back in hospital next week to have my stem cells collected.. i hope to able to document it all and share my experience with you!

I’m sorry my last post was very rushed.. I didn’t get a chance to thank each and every person who still bothers to follow my journey.. I really appreciate all the support.. my story is in no way as dramatic as what other cancer patients go through.. my heart goes out to every person whose life has been affected by this unforgiving illness.. together we have to all stand up to cancer… lots of love and positive energy to you all xxxx

“Cancer changes people.. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately”

A random quote I came across on google.. typical of when your bored and google everything including how to fix the unbroken kitchen sink. What really caught me in that quote is “hopes more desperately”.. and that is where i have found myself time and time again.. when you are so desperate you can easily go off character.. to others you are irrational… but to yourself your simply fighting for hope.. ill explain more…

Since my last post i have had two more chemo sessions and a further scan.. it has been a bit more long winded than wanted..

After my initial scan the plan was to go ahead with a stem cell transplant, but i was in disagreement with my doctors about what type of transplant to have (whether to use my own stem cells or use that of a donor).

Before anything could be set in stone i unfortunately began to break out in a itchy rash.. identical to the one i had previously when my cancer had come back. I was told i would need a repeat scan before a final decision can be made on my transplant. It was this flare up that pushed me into mentally spiralling out of control and finding myself in a whirlpool of distrust in conventional treatments..

The days leading up to my repeat scan result were very intense and difficult.. probably the most stressful time i have experienced.. more so than any time before.. i can imagine some people are thinking “if you have enough faith you shouldn’t be anxious or stressed”.. but it isn’t as simple as that.. however strong your faith is, however many prayers you read and however many people you have behind you.. there is always that simple human instinct for survival… an instinct which is driven by fear and desperation.. resulting in a concoction of stress and anxiety…

Its this desperation which at times pushed me out of my comfort zone, away from my firm medical beliefs and left me seriously considering alternative medicinal options including the use of cannabinoids and travelling abroad to seek the help of a healer.. i will delve deeper into this controversial topic in a separate post. Thankfully i didn’t need to follow through with any of these alternative options… all thanks to God.. God is love.. God can make any difficult situation seem so much more bearable..

After having more chemo my scan was repeated and finally there is now plan in place, i will still go ahead with the stem cell transplant and more importantly I am now in agreement with my doctors.. hallelujah!

I have always written honestly… i’m not one to shy away from being critical when I have had a bad experience. But I have to say the medical team who have been looking after me have been really great. Despite not agreeing with their plan initially, I was given the opportunity to discuss my ideas and concerns and reach a decision after feeling I am fully informed.

I captured the picture below when one of my doctors was explaining the various risks depending on the type of transplant. I have always been convinced that if i was to have a transplant i would use cells from a donor as this would give me a new immune system. However what my doctors tried to explain to me was that using the cells of a donor comes with a death risk of up to 25%.. much higher than the 1% risk of death using my own cells..

The plan going forward is to have a stem cell transplant.. using my own stem cells.. known as an “autologous stem cell transplant”.. i am aware that most readers wont know what that is or what it involves.. i plan to document my transplant journey in depth and explain all this.

Today i am back in hospital.. waiting to have a new chemotherapy drug ‘cyclophosphamide’… this will kick start my stem cell transplant journey which will take two months from start to finish. I will break up the different stages of my transplant journey into separate posts so its clearer.

Please pray for me that today goes well.. i am now strapped to the drips.. and can only hope for the best.

Lots of love and positive energy to everyone xxxx

Bald is Beautiful

Bald is Beautiful

Today marks one month since i went completely bald, something i havnt really discussed in depth in any of my posts.


When i was diagnosed with cancer for the first time and despite the many chemo sessions i had, i never shaved my hair. I let my hair naturally fall out, my hair loss was very gradual spread out across my treatment. I was always against shaving as for me it was important to hold onto every last strand of hair – i was determined to beat chemotherapy and retain some hair – even if its just one hair strand. By the end of the chemotherapy i was left with few hairs very thinned out and patches of bald.. for me that was a triumph.. I hadn’t lost all my hair.. when my hair began to grow out it was uneven and many told me to trim my hair so it looks neater.. but i was proud of those longer pieces of hair which had defied the toxicity of chemo drugs and survived.. 

My experience with hair loss first time round was different to that which I experienced this time round.. very different.. for the first two weeks after my first round of chemotherapy i had very little hair loss.. at one point i even thought that i will never loose all my hair.. i would tell my nurses and doctors that i still have a full head of hair.. even though i was told several times my hair will eventually all fall out, inside me i chose to believe otherwise – i was in complete denial!

By week three my hair began to fall out more.. i would leave a trail of hair everywhere.. but it still was quite gentle.. then i began to develop an extremely sore scalp, it felt like someone had got a sharp knife and made many cuts across my scalp.. it was very painful touching my head and even moving my hair about.. putting my head down on the pillow at night was also uncomfortable.. a day or so after my scalp became painful i noticed i was loosing more hair.. but i still had a full head of hair.. then one day something I really never ever ever expected in my wildest dream happened.. i went to sleep one night with a full head of hair.. and i woke up the next morning looking like a different person.. my pillow was full of hair.. it literally looked like i had a furry animal on my pillow.. but even at that point I hadn’t fully realised what had happened.. it wasn’t until i went downstairs and saw my mum gasp did it hit me that something was different.. looking in the mirror i saw that i had completely lost the hair at the back or my head.. i looked like a guy with a funky hairstyle.. the back of my head bald with a turf of hair left at the front of my head… i looked ridiculous.. i had lost the bulk of my hair.. i immediately took photos to share with my best friends.. i remember telling them how i had gone to sleep as one person and woken up as another..

That day what was left of my hair began to fall out in chunks.. i had never ever planned to shave my hair.. again i was determined to hold onto every last hair.. but seeing large chunks of hair fall everywhere was disgusting and I decided i would finally shave.. I messaged two of my friends and told them i would shave that upcoming weekend with them present (they were by my side when i cut my hair after my first diagnosis of cancer)… however by the evening of that same day i had lost so much hair I decided i wasnt going to wait till the weekend… so my fiancé got his razor, and in the middle of my parents living room (newspapers beneath me), i sat cross legged and let him shave off what hair remained.. my mum and sister Vian watching over me.. when he was done i got up and looked at myself in the mirror.. for the first time i saw myself bald.. I thought i would cry and be emotional.. instead i smiled.. i smiled because i felt a strength within me.. they say a girls crown is her hair.. but with or without hair i will always wear a crown of hope and positivity of my head.. and that is priceless…

Being bald is beautiful.. its beautiful because looking at myself in the mirror i see myself fully stripped back of anything that may beautify me externally.. this is me raw.. in a day and age where we are pressured to live a instagram picture perfect life i stand boldly bald and confident.. only i will determine what beautiful is.. i have always been very confident and never felt self conscious even at the peak of my health.. but this has made my confidence grow more.. my looks will never defy who i am.. i do not need to hide behind layers of makeup and a wig of hair to be beautiful.. not to say there is anything wrong with wearing makeup or a wig (when the occasion calls for it)… i am determined to defy that mould which society expects us to fit into.. i am who i am.. with or without hair.. confident and positive.. i am beautiful i tell my reflection in the mirror.. every single human is beautiful.. colour, size and shape doesnt matter.. let your inner beauty shine through.. don’t let anything put you down.. be you.. because you are beautiful!

I am bald.. I am beautiful..

Enough hair talk.. or no hair talk.. before i go a quick health update.. i have been a bit poorly over the last few days with a cold and sore throat.. thankfully i am now on the mend.. i also had my PET scan this week.. now it is just a waiting game.. i nervously wait for that life changing news of whether my cancer is responding to treatment.. i am trying my best not to worry to much as it is all beyond my control.. i leave my fate in the hands of God and just pray for some much needed good news!

Always ending on a positive note and sharing the love of those amazing people in my life whom i am blessed with…

Layla.. thank you so so much from the bottom of my heart for this lovely surprise.. what a interesting read.. i pretty much finished it within a hour.. such a thoughtful gift from a beautiful soul.. love you so much and wish i could give you a massive hug xxxx

My soul mate and better half was away for about two weeks and surprised me with this.. blessed to have you in my life.. my everything xxxx



Habibti Sarah D one of my lil sisters loyal and beautiful friends.. thank you so much for all the support and love.. your gifts which are on point!!! You are so cute!! Love you to bits xxxx


My beautiful cousin Sora.. thank you for getting me these individually wrapped luxury dates from Dubai.. exactly what i wanted! Love you so much!!!! XxxX


My amazing friends Howra and Zainab… I can’t thank you enough for your continuous support and love.. for the beautiful flowers (which i’m kind of obsessed with – ive taken so many photos of them in evert angle lol) and your tasty treats.. but most importantly for being such loyal and caring friends.. I appreciate your visits and cant thank you enough… thank you for being you.. for all the laughter and great time.. i love you both so so much xxxx


Marzena… some times in life we cross paths with people for a good reason.. i am so thankful and lucky to have found such a close friend in you.. you are one of the most genuine souls i have ever met.. your friendship is a blessing.. thank you for this beautiful gift – great minds think alike.. i have been using this product for a while and i am totally obsessed! My refill was just about to finish.. this cane at a perfect time! thank you!!!! Love you lots xxxx


Last but not least… Big thank you Amna for everything.. i dont know how to even describe what you mean to me.. i love you so so much, thank you for everything.. you are really one of a kind.. thank you for today.. was so lovely having you over it made my day! It is so rare to find someone like you who is so stunningly beautiful on the outside and inside.. love u tons.. and thank you for the chocolates xxxxx

Lots of love and positive energy for everyone.. i pray the next time i write a post i have some positive new to share xxxx

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

Day 8 – feeling good

I am glad to say I am feeling much better!!  My mouth is no longer sore and I am eating and drinking as normal!! I’ve also got my voice back so the house is louder again.. 

I am so thankful, i never realised how debilitating it can be to lose the ability to talk and eat due to the pain.. I am so thankful to be able to drink a cup of water without fighting back tears of pain..

At the back of my mind i am fearful that my sore mouth will return after my next session of chemotherapy (next week), but i’m trying my best not to think of it and enjoy each day as it comes..

Today i had an appointment at the hospital (Haematology day care) for some blood tests and a check up.. 


I spent about an hour waiting to be seen, i was the only young patient amongst quite a few elderly patients.. however i felt a sense of belonging, i was sat there clutching my ‘chemotherapy book’ like all the other patients.. i felt i was part of the ‘chemotherapy club’.. I could see a few looks of sympathy but one friendly gentleman gave me a warm smile and nod which made me feel better..

I first had my blood tests done and a few checks.. Thankfully my blood tests were all reassuring but my nurse was concerned as my heart rate was high and i had mentioned i’d had chest tightness and palpitations.. big mistake!!!! This meant i had to wait to be seen by the haematologist.. and i have no patience!! So back i went to the waiting room where that friendly elderly gentleman was still sat.. He was fed up of waiting and started to chat.. He told me one thing which i took home with me.. “As a patient you have to learn to be patient”..  however obvious and simple his words are they are true.. Everything about illness requires patience!

So after another half hour of waiting i had an ECG which was reassuring.. I was then seen by the haematologist.. Long story cut short.. They will see how my next chemo goes next week and then decide if i need more heart tests.. For now i still have a heart and it’s beating so i’m grateful!

Today has been great! I went out with my fiance and niece to the park across our road for some fresh air..


Since i have fallen ill i’ve learnt to appreciate the simple blessings of life.. Having enough energy to walk in the park and smell the freshly cut grass and feel the warm breeze brush against my face.. that sense of normality..

Today is a good day.. Tomorrow will be even better..

Anyway thats some positivity from my life to yours..

I got this in the post from one of my close friends.. She is just so amazing!!! I am thankful for the friends and family who make my days so much brighter.. 

Finally..


Sending you all love and positive thoughts..

Day 6 – A mouthful of pain

“I vow to never underestimate a patients pain..”

As a doctor i raise my hand and admit that in the past i have been guilty of  underestimating a patients symptoms.. I am sure many of my colleagues would say they are guilty of this too.. 

Pain is very subjective.. What one person experiences may not be the same as another.. No one should be judged.. No one should suffer..

Yesterday was a tough day.. Last night was awful.. And today is no better.. 

I am finding it really hard to deal with the amount of pain i am in, my lips, mouth and throat are so sore its agonising.. If your wondering why i have a sore mouth its because one of the possible side effects of chemotherapy is inflammation of the lining of your mouth.. And i think i have it pretty bad..

We went out to dinner for fathers day yesterday.. a brave move going out at a busy time (i can picture my doctors shaking their heads at me).. Unfortunately i didn’t enjoy myself one bit as i was so miserable beacause of the pain.. I think i would have done everyone a favour if i’d kept myself at home..

Last night i couldn’t sleep as the pain was so strong it kept me up.. I didn’t know how i would ‘keep going’ till the morning.. I wished i had a strong tranquilizer to knock me out and give me a few minutes of rest..

I miss being able to drink a simple cup of water without the sensation of razor blades cutting my mouth and throat.. Moving my jaw to talk and smile is enough to cause excruciating pain.. I would never ever wish this upon anyone..

I am thankful to everyone who messaged with useful tips to combat my sore mouth.. I am trying EVERYTHING.. No holding back.. 

So here is a sneak peak into my current “mouthcare regime” (this sounds so boring already..)

I start my day by brushing my teeth with a gentle toothpaste and a kids toothbrush!! Yes.. its soft and gentle and i can just about tolerate it.. There are so many kids toothbrushes on the market how do you choose?? I opted for the one that looked most fun.. well i might aswell make the most of being a kid..

Next.. I use Corsodyl alcohol free mouthwash.. And apply a lip balm as my lips are awful..


During the day i gargle with Difflam (its a numbing oral rinse).. This worked the first few times but now using it makes no difference..

I tried ‘Anbesol’ a gel which has an anaesthetic in it.. it just didnt work at all for me, if anything made things worse!

What has surprisingly been useful is gargling with olive/sesame oil as recommended by an amazing aunt.. However im left with a terrible taste in my mouth which makes me feel nauseous.. But trust me i would pick nausea over pain anyday..


Eating is a mission, but i just have to bite the bullet and deal with the pain or ill collapse.. Im mixing yoghurt with my food and mashing it up so its soft and can be swallowed without chewing! For breakfast today i had biscuits dipped in tea till they were soft enough.. Imagine baby food.. Thats my current diet..

I am trying to keep my energy levels up by drinking smoothies.. But even with the use of a straw its so painful i am getting so fed up and frustrated!!

Banana, kiwi, pears and apple smoothie:

Melon and rosewater:

Today i plan to survive another day.. I know things will get better.. If the pain doesnt improve my determination to keep moving forward will!

Okay enough talk about my sore mouth as it is boring me.. I will get over it.. Moving on..

Today i received the cutest cards by post from my cousins daughters.. They live all the way in California.. How cute???? Now that cheers even the most miserable soul.. Thank you sally and mimi.. 

I also got these beautiful flowers from my inlaws.. My second family who live all the way in Kuwait.. Love them!! Thank you!!!


So what’s next.. I plan to survive another day.. I can’t wait to be pain free and enjoy a meal.. 

Day 4 – day of ups and downs

Today is day 4 following the start of my chemotherapy and lets just say its not been a smooth ride..

So todays events began at 3am when i was woken up by the thudding noise of my neice who was ‘sleep running’ yes.. Im serious.. If you thought sleep walking is strange let me introduce you to sleep running.. We live in a three floor house (we have a loft conversion where my neice and sister reside).. My niece has a unique history of sleep walking/running..  Now to be fair its not a regular habit.. If anything it rarely happens.. But early hours of the morning she jumped out of bed and sprinted down the stairs 2 steps at a time, thud thud thud… It was literally like she was running away from someone… My mum is a light sleeper like myself so she heard her and managed to stop her from getting all the way down to the ground floor.. By this point i was wide awake staring at a rather amusing scenario.. My mum trying to wake little Amira up, and in return my niece with her eyes closed shouting “i need to watch the video” (what video? I have no idea.. Children these days!).. My mum eventually won the battle and successfully managed to get Amira back to her room and into her bed.. Off they all went to sleep.. And there i was left with a total inability to fall asleep.. So no real sleep.. Pure exhaustion..

The day then got better.. Despite being really tired and wearing a bag of black under my eyes i managed to go out with my family and a close friend.. We went to a ‘beauty warehouse’ owned by the family of my sisters best friend.. They basically supply shops with beauty products and hair pieces including wigs!!!

Welcome to ‘Wig heaven’:

So much fun!!!

After an hour and a half of making our way through multiple aisles stocked up with wigs we settled on one (not pictured).. Conveniently a hairdresser was there for a business meeting and she kindly gave me some tips about wigs and sorted the wig out for me!!! So sweet of her!!

My friend/my sisters best friend was also there.. Her and her mum are just the nicest people ever.. They let me try on a few wigs so i make the right choice.. Aswell as giving me lots of love and hugs they refused to let me pay for them!!!! So embarassing! Honestly some people are just so nice words cant describe them! Off i went home.. Proudly holding my new ‘temporary wig’ until my handmade one is ready..

The day was just so perfect.. Nothing could go wrong.. 

Wrong! 

A few hours later whilst at home.. Everything began to go down hill.. Health wise.. Symptom wise..

I was convinced i was going to have a smooth journey  with my chemotherapy.. No problems.. No pain.. No distress..

Well how naive was i?

Unfortunately i’m not feeling great at all.. I feel so weak and washed out (partly because of lack of sleep) but also i have awful tummy cramps.. But worst of all.. I have the sorest mouth.. I am in so much pain just trying to open or move my mouth.. I feel like my mouth is full of ulcers (even though its not).. I just cannot describe to you how painful my mouth feels.. Its like i’ve gargled in acid and the inner lining of my mouth has been burnt.. 

Yes i know i am a doctor.. But i am also a strong believer in getting advice from people who have suffered similar symptoms.. So i referred to ‘Sir Google’ for some much needed advice.. There are excellent forums with lots of advice.. So im trying to keep my mouth moist, iv tried to eat pineapples (which apparently help) and my family have gone to get me ‘alcohol free mouthwash'(its meant to be less irritable)…

Writing this blog is a great distraction from my pains.. But i know as soon as i put my phone down i will be faced with reality..

Who said chemotherapy is easy?

It’s only day 5.. 

Tummy cramps and a sore mouth are just the start.. I just wonder whats going to creep up next..

I just hope something works.. A sore mouth means talking is painful.. And eating is agonising..

Just makes you think.. We really don’t appreciate the small things we have.. The ability to eat and talk pain free..

Well.. Lets not be so negative.. It could always be worse.. Tomorrow is another day.. I’m going into hospital next week for a check up including blood tests to check my immunity.. It’s a comfort knowing that help is out there.. I am not alone..

It will get better..

Sending you all postive energy and a smile from a very sore mouth