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