Living with HL
My fight with "The Good Cancer"
My fight with "The Good Cancer"
Cancer is something that happens to other people. That's what I always assumed, without really thinking about it. No one ever imagines it will be them. But on the 9th January 2014 I joined the club nobody wants to in.. Safe to say from that moment on my life would change forever. When you get diagnosed with cancer it definitely changes your whole perspective on life and mine has now changed for the better, I'm thankful for everyday that I wake up.
Well, where do I start.. I was 23 when I was diagnosed and I was working as a supervisor at a family run restaurant which I loved and was going from strength to strength, I was enjoying life with family and friends and was happy. It was December 2013, I was under a lot of stress at work with the Christmas season and I hadn't felt right for about a month to be honest but I never thought anything of it because I thought I was just run down from working so much. I was always tired but I put that down to how busy we were. I was also losing a LOT of weight and didn't have much of an appetite although my mom didn't notice as I was mostly spending my time at work doing double shifts. I usually started about 10 in the morning and finished at 12 at night so I didn't see any of my family much. At night times I was hardly sleeping as I was having night sweats and itching a lot.
I finally had a day off from work so I went to the doctors with my mom as I hate going by myself.. If it was up to me I wouldn't have gone but she works in the health profession so she knew there was something wrong with me. The first doctor we saw basically said I was bulimic because of my weight loss, obviously me and my mom knew he was wrong. He said go and get some tonic and you'll feel better soon. About a week later, I was still the same so we went back and saw a different doctor, he examined me and told me I had a lump in my neck, I then explained the symptoms I was having. He immediately sent me for blood tests and a chest x-ray. At this point I was getting nervous, as was my mom.
A few days later we went back to find out the results, it appeared from the x-ray I had a mass in my neck and chest. I went silent and went into shock, I didn't know what it was at this point but I knew it wasn't good. That night I cried myself to sleep.. I had been referred to a haematologist at Walsall Manor Hospital to have more tests. After a lot of blood tests, a CT scan, bone marrow aspiration and a biopsy of my lump in my neck I was officially diagnosed with stage 2 Hodgkins Lymphoma. All my family had come with me to get my results and I'm glad they did because after that moment.. I got told "you have cancer" I went blank, everything went dark, I just couldn't believe it, WAIT.. I HAVE CANCER. Why me? I've never had anything wrong with me before, I wasn't the healthiest person ever but I never expected this. I just didn't know what to do, I got home and cried in my mom's arms.
This wasn't the end of the bad news that week, a couple of days later my boss came round to visit with flowers and a card from my work friends. As soon as she walked through the door I knew something was wrong. As well as being told I had cancer that week I was also told I'd lost my job as they had gone into administration. Well, that week was definitely one of the worst weeks of my life. I was devastated and I was trying to stay positive but this was just a step too far. My life was falling apart in front of my eyes.
For my treatment, I was offered a couple of different hospitals that I could go to but I declined and stayed at the Manor which I'm glad I did as I was the youngest one when having chemo so I got special treatment most of the time and the staff had been amazing up to this point so I felt I could trust them. Before I could start any treatment I had the choice to have a central line fitted in my chest, I was in two minds wether to have this or just to have cannula fitted but I'm so glad I chose the central line as it was a life saver for my veins and well I hated needles so it saved me from having one every week or so.
Chemo started on the 17th February 14' and I was having ABVD (Adriamycin, Bleomycin, Vinblastine, Dacarbazine) every 2 weeks for 6 months. I'd be spending about 6 hours or more at the hospital on chemo days so I'd been dreading the first chemo session. I had no idea what to expect. I didn't know how my body was going to handle the poison that was chemo. I still remember the nurses calling me into the 'chemo room' I literally just wanted to run the other way out the door and never come back.. Thankfully I felt fine afterwards, a little tired but okay. I even felt good enough for a Macdonald's on the way home. Looked like I was going to cope well, I was feeling positive I could beat this!
4 chemo sessions down and I was still feeling good, with hardly any side effects, on the 11th April I had my PET scan to see how the chemo was working, after waiting what felt like forever on the 22nd April I was told the amazing news there was no activity, and the cancer was gone! Up to this point i'm not going to say it was easy, far from it but I thought I was coping really well compared to other's who were going through the same. My hair was now starting to fall out slowly, when I was washing it I could see strands coming out in my hands and although it was tough to see it falling out I couldn't shave it off just yet. I'd got to the halfway stage of going through my chemo when I found some people on Instagram who were also going through treatment for Hodgkin's Lymphoma from so many different countries. They knew exactly what I was going through / feeling. As time went on I'd found lots more people and I was so shocked as to how many people were going through this devastating disease. We all have such a close bond now and I couldn't be more thankful to have found the 'Lymphoma Family' as we call ourselves. So 3 months went by and on the 24th July I had my last & final chemo.. It was definitely a bittersweet moment for me as I was so happy to be finished but I was going to miss the nurses so much, you get so used to seeing their caring faces all the time. Now by this time I'd still got hair on my head which I was grateful for but I knew it was time to shave it off, I'd got lucky to have kept hair on my head up till this point. Although it was tough to see it happen to myself, it was probably harder for my family to witness. It was an extremely emotional day and when I saw my head shaved for the first time of course I cried, it was a shock to the system but it didn't change who I was, it was still me with or without hair.
On the 28th October I went back to the Manor for my final scan results, I'd just got back from a holiday with my family as a celebration for finishing chemo so I was feeling really well. As soon as me and my mom stepped inside the consultants room I could tell it wasn't good news, I sat back in my chair and was told from the scan it showed highlighted area's in my neck and chest where the cancer was originally. I was so shocked as my halfway scan was clear, my bloods all looked good and I was feeling great.. Anyway as we left the room my mom couldn't help bursting into tears, from that point on I knew I had to be strong not just for me, but for my whole family. The next couple of months were filled with more scans, biopsies & blood tests, there were a few glimmers of hope that it was just scar tissue but unfortunately on the 29th December it was confirmed the cancer had come back. My world was once again being pulled apart by cancer, I just couldn't believe it. I was told I'd have to go through high dose chemotherapy at New Cross Hospital in Wolverhampton then a stem cell transplant at Heartlands Hospital in Birmingham.
On the 5th January 15' just under a year since I was originally diagnosed I received a phone call from New Cross telling they have a bed for me and I'd have to go in that night ready for me to go into surgery the next day to have a central line put in my chest. My mom and sister came with me that night and I was showed to my room where I'd be for the next 5-7 days. Once I'd unpacked they left and I broke down, it all just hit me and I just couldn't stop crying. I got about 2 hours sleep that night. My first round of chemo started on the 7th which was IVE (Ifosfamide, Epirubicin, Etoposide) and typical me I had a reaction to the Etoposide drug.. GREAT. This couldn't have started off worse but thankfully the next few days were uneventful and I only had a few side effects. 8 days after being admitted I was so thankful to be back home and I could finally get a good nights sleep! Unfortunately 3 days later I became neutropenic and had to be admitted again. At this point I was finding it hard to keep strong and positive, the chemo had taken so much from me. My days were filled with sleep, blood and platelets transfusions, also GCSF injections that felt like bee stings in my tummy and gave me severe back pain. One morning I woke up and was shocked to see how much hair I'd lost during the night, there were clumps all on my pillow and in my bed. Well, I knew it was going to come out but I didn't expect it this soon. As soon as I got home, I knew it was time to shave it off again. Yes, It was hard but I knew it was going to grow back, wether I had hair or not it didn't define who I was.
I had an appointment at Heartlands Hospital booked in between my rounds of chemo to see my stem cell consultant to talk about my transplant, and it basically felt like I was signing my life away. After an hour's worth of odds and percentages I'd decided to go for an auto stem cell transplant, so that would mean I would be using my own cells. I had the best chance of the transplant working if I was in remission before so I was hoping the IVE chemo I was having was doing it's job and getting rid of the cancer. I felt so overwhelmed by all the information and just couldn't get my head around it, I was so scared for what was about to come I couldn't stop the tears from rolling down my eyes.
On the 1st February I had my 2nd cycle of IVE chemo and it took a toll on my already weak body, I had mild tachycardia with the Etoposide drug so it was given to me slower other than the usual side effects it was pretty uneventful. I was admitted again on the 13th February due to being neutropenic, I spent 5 days in hospital and was pretty worried my blood counts wouldn't have recovered enough for my stem cell collection on the 19th at Heartlands Hospital but I had nothing to worry about, I managed to collect 27 million stem cells and I'd only been at the hospital 3 hours! I now had about a week before my PET scan and was looking forward to spending time with my family.
On the 9th March I got the news I had been waiting for, my scan results showed NO cancer activity and I was in remission! The IVE chemo worked and I was going ahead with an auto stem cell transplant. I couldn't have been happier and was now more determined than ever to get through my transplant and get my life back. The next couple of weeks were filled with a GFR kidney test, lung function test, echocardiogram and a dental appointment to make sure my body was ready to handle what I was about to go through.. Oh and not forgetting to get my central line flushed and cleaned. Then the day I'd been dreading had arrived the 25th March, the day I was being admitted to Heartlands for my transplant. Treatment began with 6 days of BEAM (Carmustine, Etoposide, Cytarabine, Melphalan) which was well hard, harder than I'd imagined it would be. I was continually hooked up to chemo and fluids.. I was going to the toilet more than your average pregnant women, I was getting more and more tired by the day but I knew I could get through this with my family by my side.
On the 2nd April I'd reached DAY 0 "my new birthday" but by now chemo had wiped out my immune system so I was in isolation ready to have my stem cells pumped back into me. The next couple of weeks were the most challenging of my life.. I'd never been so sick, never felt so much pain and sometimes I got to the point where I wanted to let cancer win. On several occasions I had nurses from the critical care team come and visit me and I couldn't have been more scared, I had severe anxiety to the point where I wasn't sleeping, I just couldn't relax, I was having nightmares.. I wanted it all to be over, but I knew it was going to get harder before it was going to get better and I just had to deal with it. Chemo had torn my mouth apart, one of the drugs called melphalan had caused severe mucositis in my throat. I could hardly eat anything and I was on a tremendous amount of pain medication but it didn't seem to make a difference. On day +7 things got even worse and I'd devolved an infection in my central line called candida tropicalis sepsis so I had my line taken out and after about 5 tries had a cannula put in my arm. After a few days I finally began to start feeling stronger, my days were filled with sleep, blood & platelet transfusions, fluids, antibiotics along with playing card games with my family when I had the energy. My blood counts were slowly going up and I knew every second, every minute was a step closer to getting home. On the 16th April and on Day +14 I WENT HOME! Unfortunately I had to go back to Heartlands day unit for a week to have a drug called micafungin because of the infection in my line but I was going home and couldn't have been more grateful. On the 30th June I got the results that the transplant had worked and I was officially CANCER FREE! I couldn't have been more thankful for a second chance at life.
My life has definitely changed for the better since having had Lymphoma. I now appreciate all the little things in life. It wasn't easy being diagnosed with cancer. It wasn't easy dealing with chemo and it's side effects. It wasn't easy losing my hair and facing the uncertainty.. I'm still struggling to try and find a 'new normal' with life after cancer but each day it gets easier and I become stronger. So, where I am now? Well I've recently had my 4 month check up post transplant and I'm still in remission, all my blood results were back to normal ranges and my recovery is going very well. I take each day as it comes. My plan is to get back to work next year and I'm also planning to hold a charity night to raise money for 'Bloodwise' and to raise awareness for blood cancer. For anyone going through tough times remember they don't last forever.. "Don't give up. Don't ever give up".
You can follow my journey on Instagram: SAMBAAAAA21 #SambaBeatsHL
I've also got a blog: http://believeinamiracle.wordpress.com that I express my feelings with life after cancer.