Today is a huge milestone.. This time last year I had my stem cell transplant.. the days leading up to my transplant and the days after were some of the most difficult days.. its all now a vivid memory.. so much can happen and change in a year.. i wanted to share with you where i am at since my last post and hospital admission..

Health wise praise God I am doing well.. I have come a long long way.. I have three monthly appointments with my haematology team.. I have NOT had a scan since my transplant.. the plan is to have a scan only if I develop symptoms again.. hopefully never.. so I am in remission..

I do find it difficult attending my haematology appointments because i feel i am surrounded by unwell patients in the waiting area who have been or are going through a similar journey as me.. I don’t want to be a patient.. I just want to escape and get as far as possible from that environment.. but on the other hand its a bit of a dilemma as part of me wants to jump up and tell all the patients to keep fighting and beat cancer… my last appointment earlier this month i saw a young girl who evidently had been newly diagnosed.. i had to physically hold myself back from inappropriately going up to her and giving her the fright of her life by hugging her and telling her shes got this and to keep fighting.. i see myself as being part of a unspoken “cancer club” anyone going through a similar health problem i find myself having this automatic connection with and i just want to rally behind them…

Anyway.. from my heart perspective I was under two different cardiologists (heart doctors) and now I am only under one for a fast heart beat (inappropriate tachycardia).. my latest heart scan was thankfully normal and I have chosen not to take medication to slow my heart rate.. i struggle with taking medication and taking a tablet in my case was optional.. so i opted against… I hope to be discharged from the care of my cardiologist this time next year after having one more heart MRI.. counting down the days.. one less doctor to see!

I may have touched upon this in the past.. but since stopping chemotherapy and having had my transplant I have now been officially diagnosed with ‘premature ovarian failure/insufficiency’.. i am menopausal at the age of 30! (Did i tell you… i turned 30 this July!!!! Will share cake pics down below). I am on hormone replacement therapy (HRT) patches.. I was really struggling with sleepless nights and lots of hot flushes and night sweats (menopausal symptoms).. but the medication (HRT) has really helped and its great not having to carry my hand held fan everywhere and to sleep like a human… being menopausal at a young age (young at heart) is not easy.. but its a small price to pay for being alive amongst my loved ones… menopause is one of those taboo topics which women don’t always openly discuss.. but i hope to one day talk about it in more depth.. i am no less of a woman.. i may have lost something but actually i have gained more… i am a survivor and that makes me happy.. anyway todays post is a celebration and update rather than a menopause talk.. but i will one day focus on this topic..

Finally i am on a medication (clopidogrel) to reduce the risk of a stroke.. i was put on this by my neurologist after i had an episode of temporary loss of vision earlier this year.. (refer to my previous posts! Don’t want to keep repeating and boring you..)

In other news… Theresa May is still PM.. and Brexit is still a mess..

No seriously.. in other news.. i got married this year to my amazing other half!!! Yes finally.. as they say.. third time lucky! On the 26th of June 2018 i had a very very very small and intimate wedding.. (small number wise).. i decided that i will leave the huge wedding celebrations for Meghan Markle and ill stick to inviting only the closest to me.. it was a lovely day and i am thankful to be the wife of such a great guy.. he really is my best friend.. i hope to one day share some of the professional photos (ones i can share)…

As i mentioned above.. i turned 30 this year! Its actually been quite a huge year in terms of achievements.. well still being alive at 30 is a good enough achievement for me! Thank you to my amazing family and friends for always being by my side.. special shout out to my husband and parents!

Here is a picture of my birthday cake.. by my incredibly talented friend Narjis founder of ‘Rose and Cake’ —> follow her on FB and instagram.. best cake maker! She also did my wedding cake.. will share pictures when I receive them!

I sat an exam in 2018 which i passed (MRCP part 2) and on the 9th of September I returned to work part time (50% working hours).. my GP programme directors, my supervisor and all my colleagues have been so supportive.. they have made what was a daunting prospect really manageable for which i am truly grateful.. i am taking it really slowly.. but being back at work is really my happy place.. i love my job.. i love seeing patients.. its hard.. really really hard leaving my past baggage behind me and trying to be just a doctor and not a patient.. but i am sure it will get easier with time.. I pray i get the chance to make a difference to someones life…

So in summary.. health wise i have come far.. and i am thankful to be where i am.. i am yet to run a marathon or swim across the Atlantic.. but i am happy with the baby steps i am taking.. i have learnt to enjoy walking through life.. as i get to experience it more and appreciate what is around me.. in my past life i was always running and lost my breath and the meaning of life along the way.. my car is now always on the left lane.. taking it slow.. no need to rush..

My favourite time of year is here.. we are days away from Christmas.. finally i get to celebrate it properly with my loved ones from home and not from hospital.. my Christmas tree is up.. (i know I should invest in a better tree and decorations.. but next year hopefully..)

I pray from the bottom of my heart that every single one of you enjoys this festive period.. it is about family and coming together.. sharing and love.. may you all have a Merry Christmas and a very happy New Year..

All my love and positive energy to you all… Milad xxxx

Oh.. I nearly forgot.. i am working on something which i hope to share with everyone come the New Year.. i am really excited to give back.. my way.. fingers crossed i can execute what i am planning.. watch this space!!

It has been just over three months since i had my bone marrow transplant and i am slowly recovering and waiting to see what will happen in the coming days.. I have had one hiccup since my transplant – a one week admission in hospital at the end of February. The toll that chemotherapy and a stem cell transplant have on your body is not little.. i still have ongoing appointments and follow up.. but i am grateful to God for every day that i am living amongst my family and slowly regaining ‘normality’…

I am just one of many people who has experienced blood cancer.. but there are many more out there laying on hospital beds waiting desperately for a stem cell transplant.. people who need a stem cell donor.. i pray no one reading my post will ever face blood cancer or have a loved one who does..

Please please help save a life.. my sister co-founded a charity called “Asian Middleastern Blood Cancer Trust – AMEBCT” 3 years before i was diagnosed, this charity was set up to raise awareness about blood cancer and bone marrow donation – my sister would never have imagined that someone from her own family would be diagnosed with blood cancer… but it can happen to anyone.. No one is invincible..

If you have been affected by my story and journey please attend this event to raise awareness and help drive blood cancer away..

Members of BME are extremely under represented on world wide bone marrow/stem cell donation registers – less than 6% of Asians and less than 0.12% of middleasterners.

Please help support this cause by circulating the poster for this upcoming event. The event will feature two inspirational individuals, a blood cancer survivor and a spinal cord injury survivor.

To book tickets:

https://www.tickettailor.com/events/asianmiddleeasternbloodcancertrust/146739

Thank you

Lots of love to you all xxxxx

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!)

Hi everyone!

Having fully recovered from my recent hospital admission, i am now ready to openly share the up to date details of my stem cell transplant (SCT) journey. I have tried to capture photos and a video to make it less dull and more informative…

As you may know I was recently in hospital being treated for neutropenic fever (see my last post).. during that admission I successfully had my stem cells collected! To begin with I was so disheartened with my hospital admission, I felt miserable and had very little hope that the stem cell collection would be successful.. especially as my blood count was not coming up enough for my stem cells to be collected…

As i have awful veins (thanks to all the chemo drugs i’ve had) I needed a vascular catheter inserted (a plastic tube inserted into a vein using the guidance of an ultrasound)… the initial plan was to have this inserted into a vein in my groin (see my last post), however on the day the anaesthetist decided my white blood count was too low, to reduce the chances of a infection he decided it would be safer to insert the vascular catheter in my neck (Jugular vein)… so i was taken into the operating theatres where this was done under a local anaesthetic..

I have a very very high pain threshold.. but this vascular catheter was painful and uncomfortable.. the tube feels rigid, its actually a bit bigger than I thought it would be.. maybe I am just a drama queen but honestly it was awful! My neck felt stiff, eating and sleeping were a real struggle especially on the first day.. I remember the night after having the vascular catheter inserted I couldn’t do much.. overnight my nurse and her assistant were amazing.. they checked on me regularly.. adjusted my pillows so I was comfortable, they helped me drink water.. it may sound petty but seriously sometimes it’s something so small that makes a big difference to a patient’s experience..

Having the most amazing family and medical team has really helped keep my spirits high..

My stem cell collection was slightly delayed as my blood count wasn’t going up enough I was given an injection called ‘Plerixafor’ which is usually used as second line.. this injection is ridiculously expensive but it did the job, my body responded and I was told I was ready to have my stem cells collected.. I was so happy.. mainly because I wanted to have the vascular catheter removed!

The process by which stem cells are collected is known as ‘Apheresis’.. basically it involves being attached to a cell separator machine.. which does exactly as its name says.. it separates the different blood cells, this allows stem cells to be collected into a bag and the other cells to be returned back into the body…

So to explain what happens: there was a constant flow of blood in and out of my body (hence why the tube in my neck had two separate ports)…

(Picture below: The vascular catheter has two ports, allowing blood to leave through one port and enter through another.. or as my other half says: its like a tap for hot and cold water!)

Blood left through one port, went into the separator machine where the stem cells were separated and removed… the blood then returned back into my body via the other port.. the whole process took just over 4 hours in total.. i had to remain attached to the machine the whole time.. thankfully it went smoothly… (just a small interesting fact.. says the medic.. this same machine is used for patients with sickle cell disease who need to have their sickle red cells removed and replaced with healthy red cells).

Anyway.. i hope these pictures make my waffling more understandable.. btw my machine was called Rosie!

After my stem cells were removed they were taken to the lab where they were frozen and stored.. they will eventually be given back to me later.. that is after I receive high dose chemotherapy.. oh and my vascular catheter was also removed at the end!!

In the last two weeks I have had a few investigations to make sure all is good in preparation for the next stage of my transplant journey (the high dose chemotherapy).. these investigations included a heart scan (MUGA) and a kidney test (GFR: glomerular filtration rate). Thankfully my heart scan was okay, but unfortunately my kidney test showed that my kidneys have had a hit from the chemotherapy drugs and aren’t functioning within the normal range.. it means my kidneys will need a rest after I receive the high dose chemotherapy drugs.. so a slight delay before the stem cell transplant.

[amendment made on 6/12/2017]: This morning I was told that there had been a mistake made when my kidney result was calculated, my kidneys are working well contrary to the initial result – I’m not really angry or upset at all as human errors happen even in medicine.. Everything i write on my blog is accurate to my knowledge, I don’t like to exaggerate or misinform readers.. so when my doctors correct information they have given me, I will make sure this is reflected in my blog too!

(MUGA scan)

After I was discharged home I had a week of bleeding from my bowels.. it wasn’t a large amount thankfully.. nothing dramatic at all and it completely stopped by itself.. my life seems to be filled with dramas.. honestly I am a nightmare patient.. I feel like a massive burden on my doctors and the NHS… this is partly why I didn’t report the bleeding till the third day after it had started.. anyway.. 6 days after the bleeding had stopped I had a camera test to look for the source of bleeding… praise God that was completely normal.. the Gastrointestinal doctor I saw couldn’t find anything which would explain the bleeding, he told me he thinks I probably bled because the chemotherapy drugs had temporarily affected how my blood clotted.

I’m really sorry this post has been a bombardment of information.. i have tried to keep it as short as possible..

Tomorrow morning I will be admitted into hospital to start the high dose chemotherapy.. this will be my longest hospital admission.. 3-4 weeks.. I will be in hospital right through Christmas and possibly New Year.. I will hopefully have a successful stem cell transplant during this period..

I know the coming weeks will be the most difficult weeks of my life so far.. I am mentally prepared to take on what’s to come.. I have spent the last week or so gearing myself up… there is a 2% risk of death which I am totally ignoring.. as there is a healthy 98% chance it will be okay and I will be spending 2018 at home recovering!

I have packed my suitcase.. I really pray this is the last time I take a suitcase into hospital.. I pray for normality.. I pray for the least amount of pain and suffering in the coming days.. most importantly I pray my family get their life back…

I don’t think I will feel well enough to open my blog once I start the chemotherapy.. I hope the next time I write a post its to tell you that I have pulled through!

Right.. time to sleep in my comfy bed before the big day tomorrow..

Lots of love and positive energy to everyone.. I hope you all have a amazing Christmas and New Year.. I hope to be back as soon as i can xxxx Milad

Another hospital admission… This was unexpected and more importantly uncalled for!

Unfortunately i welcomed the weekend by becoming unwell.. feeling rubbish with a fever.. and so i earned myself a bed in hospital during a busy season.. another lifetime achievement.. ☑️

Today is my third day in hospital, i am on IV antibiotics again.. basically because i had a fever and i am neutropenic (very low white cell count.. your white cells are the cells which fight infection). To be the fair I was warned that cyclophosphamide (the chemo drug i had last week) would make my white cell count drop.. my specialist nurse said it will “hammer” my bone marrow, but i didn’t expect to become unwell and end up in hospital. Since being admitted my neutrophils (white cell) count has gone from ‘0.02’ (which is very very low) to now ‘—’ (completely flat.. basically undetectable)… this is the lowest my white cell count has ever dropped to.. i am on injections which will hopefully soon kick in and help bring my count up again.. i pray..

I am used to being in hospital, those who have followed my journey know I have had quite a few number of admissions… my biggest concern at the moment is my stem cell transplant being jeopardised.. i was due to come into hospital tomorrow to have my stem cells collected.. today I was told that may not go ahead as I may not be ready… I am sitting tight and waiting to find out what will happen.. every single bit of my journey has had a hiccup here and there.. maybe it was wishful thinking that my transplant experience would be smooth…

One of the comforts I have is being on a ward i am familiar with.. there is a phlebotomist who works on this ward who I know from my previous admissions.. today she came to take my bloods and gave me a big hug and said she always prays for me… she is a devout Christian who always spends extra time with me talking about God and giving me a spiritual boost.. i won’t share her name as I don’t want to get her in trouble.. healthcare staff are advised not to discuss religion and force their beliefs on patients.. she has never forced her beliefs on me.. I just enjoy her company as she brings so much positive energy.. during my last admission she gifted me with the Gospel of John and a copy of the New Testament which I found to be a sweet gesture… my faith is a big part of my life.. and i feel a special connection with people who truly believe in God.. whatever their religion may be..

My experience during this admission hasn’t been fully great… my first night on the ward was awful.. it took over two hours from the point I was transferred to the ward for the nurse looking after me to say hello.. it felt like I was dumped on the ward and no one was interested… when my family approached the nurse to ask for something trivial (a urine sample pot!) before they could even finish their sentence the nurse put his hand out making a stop sign, saying he was too busy! It took over two hours for someone to even check my observations (which were not normal).. its just simply wrong.. when a patient is moved to a ward, usually a nurse comes to say hello, and check that everything is okay.. you don’t get ignored… anyway I have learnt to become vocal, and i made sure I voiced my opinion.. I did get an apology.. but I wasn’t impressed that the nurse went on to say I looked “too well” and that he recognised me from a previous admission when i also looked too well!! When i was last admitted this same nurse told me I was too well to be in hospital.. yet i ended up being in hospital for 10 days.. I ignored it last time, but this time I wasn’t going to let it pass! If I’m smiling and friendly it doesn’t necessarily mean I’m completely well.. a patient shouldn’t have to bleed out of his/her nose, mouth and ears to be unwell! I believe sometimes there is a prejudice towards younger patients (if i may call myself young) that we are super anxious.. that night i really felt like screaming “do you really think i enjoy being here”… Anyway when the nurse saw my blood test results and realised that I did have a temperature his manner improved…

Generally I have had more positive experiences than negative ones… the emergency nurses who looked after me were just incredible.. they were all really good, probably my best experience in the emergency department so far… this is not the reason why im saying my experience was good, but its funny so I thought I’d share it…one of the nurses kept saying how shes convinced im a movie star and that she’d seen me on TV.. even my name sounded like someone famous.. honestly it was hilarious hearing her talk.. i definitely don’t look like a movie star, im not sure if its my ‘neither here or there’ hair that gives me a edgy look… anyway in the end she realised she had seen my face many times in the emergency department.. and not on TV!

My medical team and specialist nurses are excellent.. i am grateful for the care I receive.. even when things don’t go smoothly i know that most of the staff working in the NHS work really hard to give the best medical service…

So what now? We genuinely don’t know anything for sure.. all i know is that we have to wait and see if my stem cells can be collected.. however in preparation i am currently nil by mouth (fasting) waiting to go to theatre to have a vascular catheter inserted in my groin… through this they will be able to collect my stem cells if possible (i don’t have any good veins in my arms). The image below is a very rough sketch of what a vascular catheter is.

Image taken from: http://kidneyschool.org/m08/8/

I hope to have some positive news the next time I write a blog post.. I can’t thank my family enough for everything they do for me.. I just cant put their support into words…

Massive thanks to one of the most beautiful souls ever..my friend Selin who is incredible.. i got to know her through my blog.. she has a close friend who had lymphoma and was treated in the same hospital as me.. this girl is just such a ray of sunshine.. i’m so grateful our paths have crossed… I LOVE U!!!! Thank you for the gorgeous gifts..

…..

To all my readers.. may God bless you all.. sorry for all the pictures I haven’t posted yet. Lots of love and positive energy from me to you xxxx

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