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My Experience with Hodgkin's Lymphoma - Blood Cancer (In Depth)

Updated: Mar 17, 2020

Hi guys, I hope that you’re all enjoying your week! This is a bit of a different post, but I thought that it might be therapeutic for me and hopefully help someone else, who may be going through something similar. Back in January 2018, I was diagnosed with Hodgkin’s Lymphoma (a type of blood cancer) and this post is to discuss the process I went through and my thoughts throughout this time!


WARNING – This post involves discussion of hospitals, needles, operations, sickness, chemotherapy, ECT!!


Back Story:

I have always been the QUEEN of naps, since day one of college I napped almost every day throughout the whole 2 years. After college I took a year out, to explore what I wanted to do with my life. During this time, I lost some weight – it wasn’t a substantial amount, so I put it down to working full time and running around on a shop floor all day. I had also been experiencing quite painful periods, especially since March 2018 – but who doesn’t complain about their period!?


Something’s not right:

So, in September 2018 I started University. I moved out of my family home into a flat, only about half an hour drive from my house. Since day one there I struggled to sleep and eat ... I didn’t feel quite right there so I spent a lot of time back at home anyway. Since starting University, the ‘period pains’ that I had been experiencing were nonstop, they weren’t only during a few days per month, they were there 24/7 and were excruciating. At night I found the pain unbearable; I wouldn’t sleep at all. My boyfriend would spend all night sitting with me/holding me while I cried about the pain and how frustrated I was about it all.

On November 4th, 2018, I went to my doctor who prescribed me 2 sets of medication which would treat Pelvic Inflammatory Disease (PID) as he identified that my symptoms were the same as someone suffering from this. However, on November 7th I went into A&E, with my mum, in absolute agony. Whilst I was there, I had an ultrasound to check my womb, ovaries and fallopian tubes ... which all looked fine, there was no excess fluid anywhere. This indicated that I wasn’t suffering with PID and had been incorrectly diagnosed.

The day after, I called my doctor again after no sleep and agony all night and he booked me in for a CT scan. Whilst waiting for my CT scan, a few days later (whilst in my flat at University) I got up in the middle of the night and was sick neon yellow, slimy ‘stuff’ ... which I later found out was my stomach lining.

Around this time, I was experiencing severe shakes during the night whereby I would be sweating intensely, and my skin was boiling to the touch, but I felt so cold inside. My boyfriend had to stay with me every night, so that he could wrap me up in blankets, dressing gowns, coats and duvets just so that the air didn’t touch my skin.

During this time, I was not attending University much at all; I was struggling to stay awake in classes and felt anxious of being sick or fainting all day ... I was not feeling myself! My mum started driving me to University every day, waiting in my flat for me, just in case something happened and driving me all of the way back home.


Getting Some Answers:

After numerous scans (CT, MRI and PET scans) I was called into hospital to undergo a biopsy, a few days before Christmas 2018. This consisted of a huge needle going through my lower back, in order to take swabs of my lymph-nodes. I was informed that local anaesthetic would be used, to slowly numb the pain. However, it was much worse than what I thought. I remember putting my head down into the pillow, so that nothing was delayed, and crying into the pillow. After the biopsy, it came back as non-conclusive ... no answers again! So, I had another scan and didn’t get any results for a few weeks ... I presumed that this was a good sign! After the Christmas celebrations, I contacted my University to inform them that I was not well enough to stay in the accommodation contract; I packed up all of my belongings and moved back home, to be near my loved ones.


Diagnosis:

We heard nothing for the rest for 2018, then my doctor called me to arrange an appointment on the 10th January 2019. I went to the appointment feeling a little bit nervous but not expecting anything too severe. My mum and I went into the small room, and the doctor told me that I had Hodgkin Lymphoma. My whole body went numb and I couldn’t really hear anything that he was saying, and I also didn’t really care. The only question that I wanted answered was weather I was going to be okay. I held myself together until I looked over at my mum and saw how upset she was, I just wanted to go home. We walked back to the car and my mum asked me what we were supposed to do now, all I managed to say was that I wanted to go home and eat my tea. When we got home, I went straight upstairs, and my mum told my dad what had happened. I was just sitting staring at the wall. When you imagine hearing something like that, you expect a certain reaction, which is not the one that I had. I didn’t cry for a while after getting home and I just sat there, I don’t think that it had really hit me. My boyfriend Facetimed me, to ask how the appointment went, and I told him that everything was fine … as he was at the airport about to leave for a 10-day family holiday.


Starting the Process:

During the next 10 days the lymph nodes in my neck and armpits began to swell up a lot, which was quite concerning; my doctor decided that we needed to start the whole process quickly. Throughout the rest of January and February I was going to and from another ‘Women’s Hospital’ in order to freeze my eggs. Over 2 weeks, I had to inject myself 22 times into my stomach to encourage my ovaries to produce numerous eggs – which could be frozen. The day came for the procedure (which is usually performed under sedation) and the team told me that they couldn’t treat me with any sedation or anaesthetic; they were too concerned that the cancerous area across my chest would collapse. I had gas and air throughout and finally I was done. A few days later they called me to say that 6 eggs had successfully been extracted.

After freezing my eggs, I had a consultation which clarified that the cancer was at Stage 4, so it was important to start my treatment quite soon.


Chemotherapy:

On 8th March 2019 I had my first chemotherapy treatment, which was genuinely terrifying. I went with my dad and my boyfriend, who had to convince me to stay; I sat in the bed, crying, and didn’t make eye contact with any of the other patients the whole time. I had no concept of how I was supposed to do this over and over for the rest of the year. I got told that I would have to undergo ABVD chemotherapy every 2 weeks for 6 months, and a blood test every week too. The blood tests were to identify my neutrophil count – every week it was extremely low. This identified that my body was unable to fight of any kind of infection – including a simple cold.

After attending my “Chemo Fridays” for a couple of weeks, I realised that it was not as bad as I first anticipated. The actual chemo was much worse, however all the people in the ward were amazing. The nurses became like our best friends, we’d go in and catch up about love island and gossip about anything and everything.

Every “Chemo Friday” consisted of getting my bloods taken – to check that I could handle the chemotherapy. Then I would choose a bed and get given my pre-chemo medication. This really knocked me sideways, I would instantly feel sick and delirious; I would describe it like having too much alcohol all at once, where you feel nauseous and your head/the room ‘spins’. After an hour of that, spreading around my body, my chemo would start. I’d have a canular, put into the back of my hand, and 4 different drugs would flow through it over the space of about 4 hours. It usually took slightly longer, as after a few treatments my veins were struggling with the drugs, they were stinging from the inside and resisting the treatment. Before heading home, I was given a bag of medication to take every day before my next treatment. After every session, I felt exhausted. I would go home, with my eyes shut the whole way so that I wasn’t sick and pass out almost immediately.


The side effects that I experienced during my treatment were –

· Extreme fatigue

· Sickness

· Sore veins

· Hair loss

· Weakened nails/skin

· Anaemia

· Loss of appetite

· All smells made me feel sick

· Bruising

· Sore mouth

· Neutropenia

· Hypersensitivity

· Forgetfulness (especially people’s names)

· Amenorrhoea (periods stopping)

· Tingling hands/feet

· Damage to lungs/heart (upcoming CT scan to check their current state)

· Mood swings for the first few days after each session, due to the steroids.


After a few months, everything was going reasonably well (as we knew what to expect) until the 12th June. My mum took me into A&E as I was being sick and was in excruciating pain. During the surrounding months, this was my 7th A&E visit. This time I was put into an isolation room; whereby you are completely on our own and have limited visitors. The nurses only came in a few times a day to give me injections or check my temperature and blood pressure. They also came in every hour throughout the night, to check that my drip was working. The concern was that I was experiencing neutropenic sepsis, so the isolation was in place to reduce the number of germs that I encountered. When my family came to visit, in the mornings, they had to wear a plastic sheet across their body, hairnets and gloves to come into my room. It was quite funny at first but after the first day I really wanted to go home. I got let home at lunch time on the 15th of June. I had a few weeks off chemo, to let my body recover, then I started again.

Everything was running smoothly and to plan, other than a few push backs, and my final treatment was on the 30th August 2019. I was so tired but over the moon! My family were all there, my boyfriend and my best friends too. I got to ring the bell and it was so emotional. I held myself together until my chemo nurse started crying and set everyone off haha! When I got home, to celebrate, we had pie and mash (my guilty pleasure) watched a film and had an early night … we decided to leave ‘proper’ celebrations for when I could stay awake.



I had about a week before I started my 2nd year back at University to recover. It felt surreal going back, knowing that I had been through all of that. The last time I was there I felt like a shell of myself and now I felt like I was on top of the world.


The Future:

The first 2 months after finishing treatment consisted of weekly blood tests and appointments with my nurses. My family and I couldn't believe the difference between the first scan report that we got, compared to the final one. Initially, the first scan was completely neon (indicating my body was almost all cancerous) and the final report included a completely clear image with the caption "a complete metabolic response". We attended a consultation with my Haematology Doctor, who said that my chemotherapy was over. I will still feel the side effects of chemotherapy for the next 2 years so I have an appointment every 4/6 months for 5 years just to check on how I am doing and make sure that I am still healthy. You would think that after visiting that hospital more times than I would like to remember, I would be so happy to be gone. However, since finishing I have voluntarily gone back a few times to catch up with everyone there, I cannot thank them enough!


Conclusion:

If you are going through something similar/know someone who is, trust in the people around you. They are so intelligent and truly have your best interests at heart. The process will seem seriously overwhelming to begin with but take each day as it comes. My advice would be not to get too excited over the good times so that you’re not too disappointed during the bad times either. I hope that this has given people an insight into the experiences of someone going through cancer. Thanks for reading – if you got this far haha!!


If anyone wants to ask any questions, feel free. Enjoy the rest of your week, Rach xxx

(My next post will be about what I learnt throughout this experience)

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