Returning Home

On the 6th of December 2017 i was admitted into hospital to begin stage 3 of my stem cell transplant… a long and gruelling process.. but by the grace of God i am now back home.. i have been home for a while recovering at my own pace.. I consciously chose to shut down and withdraw from everything including this blog, to give myself a chance to breathe.. being in hospital for several weeks feels like a lifetime.. especially when every day felt like a real struggle.. anyway.. im back in hospital today for a scan of my heart (ill explain later) and I thought it would be a good opportunity to start writing.. somehow being in hospital gives me a drive to write..

So how did my transplant go? In brief.. praise be to God I made it through.. I have decided not to go into great depth because it wasn’t a great experience and just thinking about it makes me feel sick.. i delayed writing on my blog thinking that i needed a bit more time before reliving unwanted memories.. so i apologise if this isn’t as detailed as i may have wanted it to be..

(The third and final stage of a autologous stem cell transplant is having chemotherapy followed by the stem cells being transfused back into the body..)

To begin with before I could begin the process I had to have a new PICC line put into my arm through which I would receive the chemotherapy and drugs..

Over the first week of my admission i received a cocktail of chemotherapy drugs, i think (excuse my bad memory) it was about 5 or 6 different drugs across the week.. one drug I remember i had twice a day.. not fun.. not pleasant.. not easy.. the worst chemotherapy drug was the one i was given on the last day.. its the drug that causes the most side effects and problems.. in particular it causes bad inflammation of the mouth and gut (it leaves you with a sore mouth, most horrific indigestion pain and non stop diarrhoea)… so whilst having this particular chemotherapy drug i was told to suck on ice lollies which actually works and reduces mouth soreness.. (making the mouth cold means blood vessels in that area shrink, hence blood supply is reduced and so less chemotherapy gets to the mouth and there is less damage)

Hand on heart I don’t think i will ever touch a ‘Calippo’ ice lolly again! Not only does it remind me of chemo.. but it was bang in the middle of winter when i had to have them.. the picture below is just of a few of the ice lollies..i had a ridiculous amount i lost count.. it was freezing cold!

The day after i had completed the chemotherapy drugs i had the stem cell transfusion.. my frozen stem cells were thawed (defrosted) and transfused back into me..

The main thing to say about this is that after a stem cell transfusion you smell of sweetcorn for 3 days.. no matter how many times you wash.. its just a disgusting odour your body gives off.. those who know me well know that the one vegetable which i hate is sweetcorn.. I always joke and say I’m allergic to it.. thats how much i can’t stand it.. so smelling of sweetcorn made the nausea and vomiting I already had so much worse..

About a week into my admission I asked my consultant.. how will I know if the transplant has been successful? He explained that there is a short term answer which we would know within weeks, and a longer term answer which will take months.. basically he told me the first step of knowing whether the transplant is working is when your body starts making sufficient new white cells.. i.e. if the transplanted stem cells make their way to the bone marrow successfully and start to make new cells… that takes a few weeks… but more importantly, knowing whether the transplant is successful in the long run, is if no abnormal cells are produced… i.e. if cancer does not show up again.. and the answer to that we will only know over the coming months..

The bulk of my admission (most of which i have repressed the memory of) was due to the side effects of the chemotherapy drugs, which only really hit hard days after they were given.. when my blood count dropped.. I was basically in hospital for supportive care.. i needed antibiotics as i had a fever.. i was on fluids as i was loosing a lot of weight and struggling to eat.. i had 3 separate blood transfusions (one for red blood cells and two for platelets).. unfortunately i had a reaction to two of the transfusions.. my body is just a bit too sensitive to everything!

Anyway.. as i was in hospital over the festive period my amazing family.. (basically my talented sister Maryam) decorated my hospital room and white board so beautifully… i bet i had the best decorated room in the hospital! We even had a mini Christmas party.. so it wasn’t all gloomy.. we made the best of a bad situation for sure!

I have completed my treatment and i have been discharged home for which i am so grateful to God for. I am celebrating being amongst my loved ones in the comfort of my home.. but.. this time last year i was celebrating being told that i was in remission and not long later I was faced with shocking news that I wasn’t well.. I’m therefore much more cautious about over celebrating at such an early stage because its still too soon.. that doesn’t mean i’m not positive or hopeful or grateful for the many blessings i have.. i’ve just learnt that as with many things in life my health isn’t black or white… i have has a transplant.. not a nose job (not that i have anything against nose jobs!)

Having a stem cell transplant wasn’t a walk in the park.. i have so much love and sympathy for anyone who has to go through anything like this.. i pray no one ever does..

A massive thank you to the medical team who looked after me.. the amazing nurses who had to deal with me when i was struggling and threw massive strops refusing to take medication or have any treatments.. my dietician.. God bless the NHS.

I have an appointment today at the hospital for a scan of my heart (echocardiogram).. less than two weeks ago I briefly lost the vision in my left eye.. i was seen in a eye hospital and had a few tests and a scan.. i was basically told this happened because a blood clot had temporarily blocked blood supply to part of my eye (Amaurosis Fugax – branch retinal artery occlusion).. my vision is back to normal but im having a scan of my heart to see where the blood clot may have come from.. it probably sounds more serious than it is.. its nothing dramatic at all.. i’m sure it was a one off.. thankfully i am fine!

However insignificant or minor the above event may have been it was scary.. it reminded me that i can never take my heath for granted.. life will never ever be the same as it was before February 2016.. i am not who i was a year ago or two years ago.. both physically and mentally… I’m much easier on myself..

Chemotherapy has left me with pigmented skin (i have patches all over my body which look like a Fake tan gone wrong).. i still have menopausal symptoms (night sweats and hot flushes) which mean i keep waking up at night.. I still struggle with extreme fatigue..

But so what? its much easier to cry over petty ailments and ignore the many more important blessings.. I am still here.. i now know the true value of health.. most importantly God has breathed life into me.. and I have found a inner peace which is hard to explain.. No matter how my day has gone, even if I am upset angry or disappointed, i go to bed with a smile and wake up with a smile..

I might have more physical flaws now than i have ever had before.. but I wear my scars with pride.. they remind me that i could have given up but i chose not to.. I fell.. I got up.. I kept going.. I couldn’t feel more beautiful or be more confident and proud of myself.. I am not arrogant but content.. it’s so easy to cave in to the many pressures this demanding world puts on us.. I happily leave the house bare faced with my hardly there eyebrows/eyelashes, dark under eye circles and sick looking face.. this is me.. i don’t need to hide behind a mask.. I accept myself as I am.. I choose how to live.. I don’t let others choose for me..

I fought.. I survived.. and i am ready to face whatever comes next..

Milad xxx

(Forever grateful to God, my family, my other half and to everyone who remembers me in their prayers.. thank you!)

11 thoughts on “Returning Home

  1. What a beautiful and inspiring post. Your strength is stronger than your suffering. This post resonates how much of a life challenge like your one can turn someone into the strongest warrior. You might not know it but your words are a source of strength for your readers too. Having seen a loved one go through cancer, I’ve seen how mentally and spiritually challenging it is. However reading your post I can see how resilient you have become. May Allah always give you strength and I wish you a speedy recovery. Xxx

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  2. So happy to see you’re doing much better! I kept on refreshing the page every couple of days to hear the good news! May Allah SWT complete your shifa and make it a permanent one. Stay strong Milad!

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  3. So happy to hear you are back home, alif alhamdulilah. Inshallah the transplant was beyond successful and this is the big step to full recovery! Nonstop prayers and love your way. You are an inspiration xxxxx

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  4. Your faith in Allah SWT and your strength is an inspiration to all. You are in our prayers and your journey through this blog has touched many people. Praying for you always.

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  5. “Scars show us where we’ve been. They do not dictate where we’re going. Each scar holds a lifetime worth of lessons and memories. Some scars are on your soul, some on your skin. Some outside, some within. Some are hidden, while some are visible. Some have a story, some are unwritten. Scars can remind us that the past is real. Scars don’t effect our worth, but our knowledge.”

    Always in my prayers Milad x

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  6. You are an incredibly strong woman Milad.
    You have been in my prayers and thoughts, your strength has both moved me and inspired me.

    I’m so relieved to hear you’re doing well and the transplant was successful.
    May God grant you a full recovery insha’Allah and bless you with all that is good.

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  7. Milad,
    I’m still praying for you, you are a very brave lady, you have been through a lot.
    You are such a positive lady, god bless you.

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