I started writing this post three months ago but as my luck would have it I jinxed myself and ended up having a slightly more complicated last stretch of treatment..I’d been plodding along minding my own business getting on with life, when I learnt the dreaded word, the word that would come back to haunt me… penultimate. Yes you heard me, penultimate – i.e. second to last.
Considering I was in hospital for treatment every three months I was meant to have my very last cycle of chemo in June including the IV/intrathecal/steroids etc basically the whole shebang. I decided to at every opportunity use my newly found word and say to my friends ‘hi guys it’s my penultimate chemo coming up.’ That’s basically how the conversations always started and sometimes ended. Yes I’m afraid our conversations are always that exciting.
So come March I went in, had my penultimate chemo, my penultimate intrathecal, and my penultimate set of steroids. Nothing felt that different – I had a sore mouth for a few days but nothing out of the ordinary.
So on the 13th of March, when I got that private number call and I picked up to hear my CNS’ voice I panicked. I still remember before I was diagnosed I had a blood test done and I received a phone call that same day from the hospital to come in ASAP as every component in my blood that would help it clot, that would be my defence against any bugs and creepy crawlies was to say the least non existent. Anyway, that previous week when I had the chemo injected into my spine, some of the CSF was removed – the fluid that surrounds our spinal cord and brain, and it was sent off for testing as per usual. Some suspicious cells had been found in my CSF so my consultant wanted to see me to discuss it further. I put the phone down and immediately called my brother (basically my emergency helpline) in tears and told him. And he, calm as a cucumber said ok don’t sit there and stress we’ll go tomorrow and see what happens.
I don’t know if you want to call it irony or a mere coincidence but just that morning, half an hour before I received the phone call I’d gotten an email from uni giving me all my placements for the upcoming year. So there my mind started to wander about why life seems to do this. I retreated back into my shell as I always do when something starts to go slightly wrong, and counted down the hours whilst imagining the worst.
I refused to tell anyone else, fearing just saying the words would make it real and also not wanting to worry anyone least of all my dad. So off we went, my brother and I and waited to see my consultant. He basically explained that some of my original leukaemia cells had been found in this spinal fluid. My reply – I’m meant to start uni again this year, and we’re all going on holiday in a couple of weeks. At that moment in time I couldn’t think of anything else, genuinely, it’s funny the things that will go through your head when you’re given some ‘bad news’. He explained that nothing was clear here and this situation was unusual as it wasn’t the usual route that a relapse occurred. Usually it would be found through blood tests, or through a bone marrow sample. But him, being one of the best doctors in the field was very honest and frank that he just didn’t know what to do, there were no clinical trials or research that he could refer to – chances are I would have to have induction chemo all over again and have to have a bone marrow transplant. But he would need to discuss with his colleagues around the country and I would need to have yet another intrathecal to take another sample, inject more chemo, and also do a bone marrow biopsy to see if I had had a full blown relapse. I left my brother to ask the questions, as there’s no doubt he was thinking about the same things I was and I’m grateful to God he was there to allow me to stop fighting back the tears and just let go. I remember back when I was first admitted on the ward after my diagnosis and a lady who was in the bed opposite me, told me very simply and frankly, ‘I cry when I feel down, but when it’s about my illness I only allow myself five minutes’. I was in awe at how strong she was, but it’s something I’ve never forgotten. So I had a couple of minutes to myself and then we came to a decision that we would meet again the following week for the results from the tests and once my consultant had gotten all the information he needed.
On the way home I kept thinking one thing; My life is just about getting back on track, having to leave uni the previous year after just a couple of months as my body and immune system couldn’t keep up was bad enough but at that very moment I was in the best place I could be. I was managing my medication well, my immune system had decided to be my friend, I had planned a holiday, was set to start my final year again in June. I was the happiest I had been in years, mentally and emotionally so well that I had come off my medication and my future was starting to look a little clearer but now this. I couldn’t face telling my dad, part of me felt like I had disappointed him, that my body had let me down again and my life would be put on hold yet again. But Allah has blessed me with a wonderful supportive family including my brother, he has always been my first port of call in any problem or worry and who I can say is hands down the best brother I know. He simply as the protective caring brother he is took over and said, I’ll come over later and we can tell dad together.
I went home, tried to sleep, my brother came over and explained the situation to my family. My dad was as shocked as anyone would be but a few questions later he came and gave me a hug and again the same words I heard from the very first time I was diagnosed – everything will be alright.
I called my best friend and told her everything, I cried for a bit and she told me she would be coming to see me and that was that. I still remember the very first time I went into hospital she turned up and spent the night with me. We often remember that night mainly because that was the night I was, no word of a lie, named ‘the patient with platelets of 7’.
I think it was silently decided that I would go in to the hospital the next day with both my sisters and my friend, and they stayed there keeping me calm whilst I had my intrathecal chemo and my bone marrow biopsy. Again, the nurses tried sedating me, my blood pressure was too low so I had to do without but alhamdulilah it wasn’t as painful as before.
I got home that day like a zombie. I hardly ate that week, hardly slept aside from the temporary sleepiness the painkillers gave me, I hardly moved or left the house or even spoke to anyone. Staying silent seemed to be the only way I could cope and it just took me all the way back to two years before whilst I was on intense treatment where I went through a period when I basically just stopped talking, that was it, I could form the words and my mind was wide awake but I’d sometimes manage to mumble a few words or whisper but that was it. It’s actually something called ‘chemo brain’ and is a real thing, I’m not sure if this was the same thing or I was just retreating into my shell but suffice to say it brought all those memories back again. I got the dreaded ‘intrathecal headache’ which I haven’t had in so long, that went on for days. It’s basically one of the worst headaches you can feel, the pressure is only relieved by lying down, and is at times so bad that I would constantly vomit, I could only stay upright for a short period of time before i felt like my head would explode. My friend offered to visit and I refused saying I would be bad company but her reply was simply so what, I’ll sit there with you, not talking, playing games on my phone, so I didn’t refuse, I could do with the company. I couldn’t even sit up the headaches were that bad, so I was in bed the whole time, and she sat there talking when I wanted to talk and keeping me distracted. She introduced me to ‘cafeland’ (thanks for that and by the way guys if you’ve ever wanted to own and manage a cafe/restaurant that’s the game for you). We established one thing though that my penultimate chemo was not actually the penultimate one as I had 7 more left (kill me now). We refused to use that cursed word again, and I put it on par with You Know Who.
That week was one of the longest of my life, I’ve never really had to wait for bad news as when I was first diagnosed I had no idea anything was even ‘bad’ to begin with and it all happened so quick. But I had so much love and support around me I couldn’t complain, my dad was there again bringing me breakfast in bed comforting me when I was so overwhelmed with pain or being sick even if it was the middle of the night. I’m truly blessed to have friends and family who drop everything to come and spend time with me, who listen to me cry like a baby and reassure me that things will always be ok and that we will deal with it together.
The night before we got my results my sisters decided to take me for a Nando’s trip, I’m not sure if it was just because they wanted to keep my mind off things and get me out of the house or if it was because if things went wrong this would be my last trip out to eat for a long time. Either way, I knew we were in it together and just like they were there to care for me like I was their own child they would be there again. I’d pretty much eaten very little for that last week and every meal I had vomited so even Nando’s which I love, (like true love the kind you would go to the ends of the earth for) couldn’t make me work up an appetite. We went and ate, and avoided talking about anything hospital related. All I regret now was not finishing my meal because I could kill for a Nando’s right now!
The 22nd of March came, I woke up, wanting to get the day over with, it was a dark rainy day, but I sat there and I took my time and did my hair. It seems silly, but my hair had just recently gotten long enough for me to do things with it (and anyone who knows me knows how much I loved my long hair and how I love doing braids) so I did a braid in my hair thinking I would soon have to say goodbye to all this hair again so I may aswell make the most of it. We went to the hospital, my brother and dad by my side, and I was silent pretty much the whole wait. When we were called in, my consultant with a smile on his face told me the bone marrow was clear, so was the repeat CSF. He was baffled as were we about what had happened and also what this meant. The consensus he had reached with his colleagues was that this wouldn’t be treated as an overt relapse, (thank the Lord) that my treatment would just be upped to monthly and they would keep a closer eye on me until the end of my treatment in September where I would also have another biopsy. He was as surprised as we were and was honest enough to tell us this was complicated for him as he had never in his experience come across a situation like this – but of course Sod’s law with me being a medical student it obviously had to be more complicated!! Nevertheless, this was honestly the best outcome any of us could have hoped for.
You know the phrase people use when they say they have a weight on their shoulders? Well, that was me, but walking out of there that weight genuinely felt like it had been lifted, no word of a lie, the sun was out and I was suddenly hungry! My dad was so happy smiling from ear to ear, and I let everyone know what the doctor had said. And the best news of all (of course) was that I was cleared to go to Turkey with the family – the thought of having to cancel 11 tickets alone was giving me palpitations (yes the trip reminded me of the entire home alone family going on holiday, but I assure you, this was crazier).
There are a few dates I have ingrained into my mind and this one has been added to the list because it genuinely felt like I was being told I was perfectly fine even though everything wasn’t perfect, but that didn’t and doesn’t matter because instead of remembering this day for bad reasons it has done the opposite and given me hope.
Over the next few weeks my hair started falling out in clumps likely due to the extra treatment I’d been having, I panicked and was crazy worried I would soon be saying goodbye to my hair, but it settled over a couple of weeks. Thank God that I was repayed with an even thicker mass of hair after it all fell out that to lose some of it now wasn’t the end of the world.
Since then, I’ve been in hospital every couple of weeks to monitor my bloods and monthly for treatment, and now as I lie here recovering I have just had my PENULTIMATE INTRATHECAL CHEMO! Yesssss indeed. I can stop referring to it as the p word now as it’s done!!!! InshAllah I only have one more IV chemo, one more set of steroids, one more intrathecal, one more bone marrow biopsy and one more month of taking these chemotherapy tablets!!! I think that calls for a party! One that I’ve been planning for the last couple of years now, yet I’m too afraid I’ll jinx myself again.
These hiccups along the way have only reminded me of the reality that nothing ever works out the way we want it to. Yet, I’m in the best place I have been for years, I’m back to being a final year medical student and I’ve actually managed to make it through the last 6 weeks on the wards pushing through my fears and anxieties, with my health on my side. I’ve been lucky enough to end up with such supportive people around me at uni that encourage and reassure me every single step of the way that I can do this. My life seems to be moving forward and I’m off on holiday to Croatia in just a few days time! I won’t lie the fear of things going wrong is always there, but I think that might be the pessimist/worrier in me. I genuinely think I find things to worry about as not having anything to worry about worries me!
The best way I can sum up that experience was what my best friend said to me at the time which will always stick with me, that nothing is ever impossible and I am proof of that. Make the most of the time you have, take it from me, regret is the worst feeling in this world.
As always I only ask that you keep me in your prayers, that from here on out things go ok and I can make it through this year with my health on my side and get this degree done!!! The light at the end of the tunnel is definitely in sight.
Love, always x
P.S: be careful using the p word.
P.P.S: want to learn how to write an essay and perfect the art of rambling on? I’m your person.