Part Three:Relapse/Bone Marrow Transplant

Hi everyone, I hope you’re all well! Thank you so much if you have read my previous posts, it really means a lot, but if you haven’t please do read them so you will have a better understanding of my battle when you’re reading this post. As I mentioned in Part Two; six months after I was told I was cancer free, my cancer came back. I cannot put into words how awful it was for me and my family knowing I had fought so hard the first time and for me to then to be told that I have to do it all over again. Luckily I am here today cherishing every moment in life; in this post I will share my second battle with cancer.

Symptoms/Local Hospital

Life was looking good for me after I was told I was cancer free: I went back to school and my life was getting back on track and my hair was growing so fast and it grew back curly which is one of the perks of having chemo I guess. My hair was dead straight before treatment and it was nice to just have some sort of hair on my head after being bald for so many months. In April it was my cousins wedding, I was so excited for the day and to wear my beautiful red saree, my hair was still not long yet so my mum bought me a gorgeous wig to go with my outfit. The day was so lovely and I could not have been any happier, during the wedding I was feeling really exhausted but I just thought it was from waking up early and all the excitement. The next day I started to have extreme stomach pains that felt like someone was shooting me constantly, I took pain killers hoping it would ease off but nothing changed. My mum took me to my local hospital to get it checked out just to be on the safe side, I was immediately booked for a CT scan which showed my lymph nodes were enlarged in my stomach but doctors were not certain because when you have a normal virus your lymph nodes enlarge as well. My pain was not getting any better; it was just constant, I could not sleep it was that bad, I was given morphine orally but nothing helped.

Royal Marsden Hospital


A week later, I was sent to the Royal Marsden Hospital (RMH) from my local hospital in an emergency ambulance, the pain was still there and because the RMH is a specialist oncology hospital they knew exactly what to do for my pain; they put me on 24/7 morphine drip which did the job. I was at ease from the pain after a week and half of experiencing it. To confirm my relapse I had to have a biopsy operation which was done at St George's Hospital, I remember being in a stretcher in an ambulance scared to death of what was going to happen and why it was happening to me. I was always in tears because I was still in shock about my relapse and the fact I had to go through treatment again was a massive fear for me. At St George's I had a biopsy done in the operation theater and whilst I was under general anaesthetic they put a hickmen line in me as well. Waking up was the worst part as I was in so much pain from the operation and where they inserted the hickmen line. I went back to the RMH the next day, which was the day Kate and William got married (29th April 2011.) I was too weak to even watch the wedding on TV which was a shame as I was really looking forward to watching it but I suppose meeting them in September 2011 makes up for it! Whilst we were waiting for the biopsy results to come back I was on the 24/7 morphine drip, I barely ate or drank anything to the point where I had to have the dreadful feeding tube!


A few days later my biopsy results came back confirming the lymphoma was back, which is what we were expecting, but everything was just so overwhelming at the time. I just wanted to escape from it all; my consultant spoke to me and my mum about my treatment this time which included three high-dose chemotherapy sessions and a bone marrow transplant. I started my dreadful chemotherapy session the next day, this time round I knew what was going on and what to expect from the side effects. But wow, I didn't know how high-dose chemotherapy totally wipes every single energy cell you have in you! I had to have the lovely cocktail of chemo for five days; I was seriously unwell afterwards from the side effects and was in bed for 3 weeks straight.

Once I recovered and was able to eat without relying on the feeding tube and I was able to finally go home until my next round of chemo! I honestly cannot emphasise how happy and excited I was to go home, a place that most people take for granted. As much as all the Royal Marsden staff tried to make me feel like I was at home and how they were all so lovely, nothing can replace your own home. As I took so long recovering from my first round of chemo I only had less than a week to spend at home before I had to go back and have my next round. This time round it was nowhere near as bad as my first round of chemotherapy, this is because my body was getting used to the high-dose medication that was being injected into me so it was able to cope with it. Of course I did still suffer from extreme tiredness and sickness but that was nothing new to me! Once my chemo session finished after five days I was fit enough to go home for my birthday which was the next day, that was the best gift I ever received. As a cancer patient or any long-term hospital patient, going home is like winning the lottery, it’s just an amazing feeling that I cannot explain.


14th Birthday


On the 6th June 2011 it was my 14th birthday, I was truly blessed to spend the day at home with my friends and family, even though I spent the day in bed as I was really weak and tired from the chemo. I think the highlight of the day was when a couple of my friends came round my house after school and gave me a massive teddy bear that was signed by my whole form with get well soon messages which was so sweet of them and I am so thankful for it. I even took the bear to hospital with me to put by my bed and whenever I was feeling down I would always read the messages which cheered me up and made me smile. Also just spending time with my friends assured me that I had the most incredible support from my whole school and the encouragement to keep fighting this battle. During my stay at home I did have several trips and stays at my local hospital either because my blood counts were low, meaning I needed a blood transfusion, or I had an infection due to my low immunity so I had to be treated with antibiotics intravenously! By the time I recovered from the infection I had it was time for me to go back the Royal Marsden for my final round of chemotherapy.


Bone Marrow Transplant

While I was having chemo, my brother was tested to see if he was a match for me for my bone marrow transplant. This was very nerve racking for me and my family because if he was not I would had to have been registered on the Antony Nolan register until someone in the world was a match for me as only 1 in 4 siblings are a match. A few weeks later it was confirmed that my brother was 100% match, this was the best news ever, a day I will never forget and forever cherish.My family were really worried about the whole transplant anyway and to be worried about finding a match was just overwhelming, so having a donar ready was a massive, massive load of stress dropped.


A bone marrow transplant is a process to replace damaged bone marrow with healthy bone marrow stem cells. It basically involves taking healthy stem cells from the bone marrow from one person and transferring them to another person who suffer from illnesses like lymphoma or leukaemia. The reason why doctors decided I needed a bone marrow transplant was because the lymphoma returned for the second time, this means there is always a chance of the cancer returning again so by having my brothers stem cells that do not contain any cancer cells, it reduces the chances of my cancer returning. Clever huh? As clever as this all sounds bone marrow transplants are very, very risky and complicated processes: not all my friends who undergone this dreadful process survived. I suffered from a lot of side effects and at times I did think I was losing my own body. Luckily I have gone through this massive roller coaster and I am here today healthy and happy!

Once we got the good news my brother was a match it was time to think about the actual transplant date, conditioning treatment and many assessments to check if I was fit enough for this transplant. Conditioning treatment is done before the transplant, this is where you have high dose chemotherapy, radiotherapy or both to kill every single cell in your bone marrow which allows new stem cells from the donar to grow in the bone marrow. In my case I had to have high dose chemotherapy and a total body radiotherapy for three days morning and evening. During my stay at home after my final chemotherapy, I spent most days going to several hospitals in London for check ups like the Royal Brompton hospital to check my lung function, the dentist, a PET scan to see if I was in remission, an echo scan (heart scan), countless amounts of blood tests and many more! I also had many trips to see my actual transplant consultants to discuss the transplants, the side effects and how it will effecf my life in the future. It was all overwhelming, upsetting and scary, I think the part which really got me was when they said I only had a 40% chance of surviving this transplant! It all felt unreal but I knew I had to be strong and get through this no matter what.

Conditioning Treatment Pre Transplant 


On 15th July 2011 it was time for me to go back to my second home for my conditioning treatment and my transplant! The first three days I had high dose chemotherapy, I was feeling fine after the chemo apart from tiredness and sickness. The worst part was radiotherapy I have never had it before as part of my treatment so it was all brand new to me. I hated every moment of it, the whole process was painless but It was just the fact I had to lay very still on a bed for 45 minutes, my first session really scared me because I did not know what to expect! I was in floods of tears by the end and did not want to go back in the evening for next session. For my next session, Claire the play specialist came along with me and I also took my docking station with me so I could listen to my own music. I felt much much better during treatment as I was listening to a bit of Beyonce and Ed sheeran which took my mind off everything. For three days I had two sessions of radiotherapy everyday, I managed get through it all with the support of the amazing play specialists and my mum and of course listening to Beyonce made it all better!


Transplant


On 22nd July 2011 it was finally the day of my transplant! I was feeling anxious and excited at the same time to have my brothers stem cells inserted into me, the stem cells were transferred into me just like a blood transfusion. Many people think you undergo surgery but I think that's only for some cases. I was isolated in a room for six weeks until my brother's stem cells entered my bloodstream and made their way into my empty bone marrow which then began producing blood cells like HB, platlets and white blood cells etc. I was isolated in a separate room because I had no immune system to fight any infections due to the chemo and radiotherapy, so the only people who were allowed in my room were my mum, doctors and nurses. Whenever doctors and nurses entered they had to wear aprons and gloves for infection purposes, my mum also had to do the same.


I had an awful six weeks in isolation which involved a lot of complications, I had a really bad allergic reaction from the high dose chemotherapy that I had as my conditioning treatment which made my whole face swell up. I was constantly feeling weak, sick and tired from the total body radiotherapy which was such a horrible feeling, although I did sleep for most of the time in isolation which meant I was at ease from pain. Drinking and eating wise was all intravenously because I had really bad painful mouth ulcers and I did not feel like eating anything as the chemo changed my taste buds. I thought chemotherapy was really bad but boy was I wrong; the transplant literally took me to hell and back. Once my blood levels started to come up I started to feel better, it still took a long time for me to recover but I was slowly yet surely getting there. Everyday I would make some sort of progress; I lost a incredible amount of weight so my aim was to try and eat by myself without depending on the TPN (nutrition given through bloodstream).


Transplant Side Effects


Something that affected me severely is a disease called grafts versus host disease. This occurs after transplant, it happens when my brothers stem cells (donor) attack my own body cells because my brothers cells (graft) see my body cells (host) as foreign and attack them. I suffered from the two types of GVHD acute (mild) and chronic (severe) which affected my skin, liver, stomach, eyes and mouth. During transplant I suffered from skin, stomach and mouth GVHD.


I was out of hospital after 7 weeks straight off being inside, as I always say it was the best feeling ever, I was still not myself when I was home as I was still weak and tired but everyday I was making progress. I was on a lot of medication for precaution and one of them was a immune suppression medication called cyclosporine. This was taken to prevent transplant rejection, it tasted and smelt so disgusting that I would dread taking it. Sometimes I would be physically sick due to the awful smell, so I literally hated taking it twice a day.




A picture of me in hospital, one month post transplant.
It was so good to be back home, everything was going in the right direction and my consultants were really pleased with my progress. Everyday I got stronger and I soon had home tuition to catch up on some school work! It was a massive shock to the system learning wise because I had missed nearly 2 years worth of education, but the tutors were great and understanding! I had many visits from friends and family and it was just great to see everyone after such a long time.

Every two weeks I had an outpatient clinic appointment to see my transplant consultants about my progress and medications I was taking at a time. If my blood levels were stable I was able to reduce the amount of immune suppressions I was taking, but if I stopped taking the medication all of a sudden it would be a massive shock to my system and GVHD would likely attack my body cells. In December I was able to stop taking cyclosporine as everything was going in the right direction, that was the best christmas present a doctor could ever have given me!

Unfortunately in a few weeks I became very ill due to GVHD in my liver, I was back in hospital to be treated with steroids for this disease for another dreadful two weeks. However I was soon discharged and carried on taking steroids orally twice a day. Once I was on the steroids I ate like I have never eaten in my life, I started to crave food for the first time since my transplant. It was a good thing when I started to put on a bit of weight but not when I had chubby cheeks! The steroids kept the GVHD under control and I was able to get on with my life; two weeks later I decided to go back to school as I felt like I was ready to move forward even though I was not 100% well, I took everyday step by step.




A picture of me 6 months post transplant and going through the steroid cheeks phase.

Honestly going back to school was not easy, I had missed so many months and years of education it was hard to get my head around the whole school routine. On top of that I was very nervous about going back to school with no hair! I was extremely lucky to have the brilliant support from my school who made me feel welcomed and accepted me for who I was; with hair or without any hair. I thought I would be at school part time but surprisingly I went back full time, i think the main reason was because it took my mind of my illness and the medications I was taking at the time. People always tell me "you never complain about anything how do you do it?" I have always said to myself that there are other people around the world that are in a much worse situation than me. I am in no means saying having cancer was easy, it is the toughest thing I have ever been through in my life, but I believe God will never put you through anything you can't handle.

Life After Transplant 


Generally, my future was looking bright apart from having a few problems with GVHD, I was off the immune suppression tablets and steroid tablets and my body was coping well. I was starting to enjoy my life without my illness holding me back and I felt like everyday I was getting stronger and making progress slowly but surely. In 2013 I managed to complete my GCSE exams and achieve 1 A, 2Bs and 3Cs which I was so proud of as I had missed so much school. It just goes to show if you are determined and willing to work hard for anything it will pay off in the end. I wanted to prove that cancer does not define me in any shape or form and the key to passing all my GCSE exams was working my absolute hardest even under my difficult circumstances.


My hair was growing back so fast which was something I was looking forward to ever since it started to fall out. It has now grown back curly and really thick, before my illness it was very straight and thick, strange huh? I call them chemo curls! I have been through so many hairstyles since my hair has grown back and have loved experiencing them all, hair is something most people take granted. As a girl it was such a horrible experiencing losing all my hair and I never want to lose it again! I also want to say a massive thank you to the little princess trust for giving me a beautiful black wig and lots of bandannas to wear during treatment, it truly made me feel like a normal teenager.



My hair has grown back ridiculously thick and curly :D 
This is my full story of my cancer battle and I hope this has given you an insight into my story and has helped you in some sort of way. I am currently in remission and three years post transplant! As you probably can tell it was one hell of a fight for me to be in the position I am in today, but you know what? I believe everything happens for a reason and you just have to stay positive no matter what is thrown at you in life. Yes of course it was the most daunting feeling knowing I could die from this awful disease, but it has taught me the most valuable lesson in life to not take your health for granted. I would like to take this opportunity to thank all the amazing doctors, nurses, hospital staff, charities, friends, family and many more that have helped me to overcome this battle. 




A picture of me now - 3 and a half years post transplant. 

If any of you guys are 16 and over please sign up to be a bone marrow donor as you could save someones life in the world just like mine who is in  need of a life saving transplant. For more information check out the Anthony Nolan website.

http://www.anthonynolan.org/

Thank you for reading,

Kirushni

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