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

The short cut

Yesterday i cut my hair.. Short.. A bob to be more specific..

A brave decision.. But one i had no choice but to take..

The last time i had short hair was when i was a baby.. 

I love long hair.. We have a saying in arabic that a womans hair is the crown of her beauty. I have never cut my hair short, i always grew it long and loved its length, if it wasn’t for my mum screaming down my ears to always trim it i would never let scissors go near my hair.

I love hair.. So much so that i have never died my hair out of fear that my hair may get damaged.. After showering i only towel dry my hair to avoid exposing it to too much heat from a hair dryer.. I only use heated products/go to the salon on special occassions.. So you can see.. I have always looked after my hair.. But now i will loose it all..

I decided to loose my long locks as psychologically it would be more easy to cope with the transition from long hair to short hair to no hair.

One of my dear friends took me to Toni and Guy where i met a lovely stylist called Nora, i told her my story.. Her eyes became teary and like a baby i cried as i ran my hands through my long hair.. I asked her to do what she wanted with my hair but i wanted it short.. I had nothing in mind.. I dont like short hair and i was not cutting my hair out of choice… So Nora cut my hair into a cute bob.. I feel naked.. I miss my long hair.. I am trying to stay positve.. I keep reminding myself that it will grow back.. One day it will..

I took some of my chopped off hair home with me.. Does it give me any comfort? Not really.. But its a reminder of what was and what will be.. My hair will grow back.. (She says as she wipes away her tears)

So cancer.. I am still on my feet.. U have cost me my long locks.. But they will grow back..