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

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