This has been extremely difficult to write. I have had to relive the most trying time of my life. I have cried, laughed, & tried very hard to forget certain aspects of my stem cell transplant. Going into it we knew there was a 55% chance that I wouldn’t make it – I would either be cured, or I would die. Flip. Seeing that in writing in front of me right now gives me goosebumps. I don’t think you can ever explain that kind of fear to someone unless they experience it themselves. We knew we had to do it, & I have always been so open about my journey to get to this point. Looking back, I don’t think I would have the strength to go through this process again. There were times during it that I was wishing I could rather be taken than have to endure more pain, exhaustion & the nausea. I had no idea just how difficult it would be, & I would never advice that someone go into an experience like this willy-nilly. I am forever grateful for my doctor, family & friends who sent me messages of encouragement throughout & wouldn’t let me simply give up.
I went to see my doctor at the beginning of the year & we discussed all the nitty gritty. She made it clear about the high risk we were taking. & everything that could happen. She made sure that this is what we wanted to do, & that she would do her absolute best to manage everything as best she could. She was positive about this, but knew that we had to know all the potential positives & negatives. I was sent home to make an appointment with a dentist to ensure that I had no infection of any kind, as this would hinder my progress with my transplant & could spread throughout my body. I was also started on Neupogen injections twice daily, which husband had to give me. Luckily all my tests came back clear & I could then be admitted into hospital to begin the journey to my new life…
I was admitted into Olivedale Hospital & we managed to access my port for the very first time. My veins are TERRIBLE & this is a source of great anxiety for me, as they often have to poke me several times in order to get a line up or even draw blood. I know that I often psych myself up about this, so I was so grateful when the pushed the needle into my port & all was good.
I then began the process of having my stem cells retrieved. This was really not painful, & was simply like giving blood. The idea of it was a whole lot worse than the actual fact. I had the friendliest man from SANBS with me & performing the retrieval. We were hoping to get enough cells after only one day, but unfortunately only ended up with 1,7 million & we needed double that. So I had this over 2 days, & this magic unicorn blood was then packaged safely & sent off to be stored for the transplant.
I then had only 2 days of plasmapheresis (my usual treatment that I have been going for on a monthly basis for the past almost 3 years) & got to go home before chemo started. Unfortunately the constant blood tests also showed that I am anaemic, so this meant an iron drip & becoming more aware of the stress that was being put on my body from the external factors. However, I was so excited to get back to my babies & have some quality time with them before all the real trials started. I decided to take this weekend to spend outside, appreciate my life & just meditate on what was going to happen. I needed the time & space to just breathe…
And then began the chemo…
I was admitted back into hospital where I would be on continuous chemotherapy for 5 days. They had to do a test patch of the one medication (ATGAM) that they would be using alongside the chemo, & I reacted to it. This delayed everything, but I convinced them it was largely due to my extremely pale; never-see-the-sun skin. They gave me phenergan to help with the reaction & it pretty much knocked me out!
On Tuesday 22 January 2019 I began my very first infusion of chemotherapy & ATGAM. I had bruises on my tummy from the test patches, but seemed to cope with the actual medication being infused through my port. The first side effect we did see was extreme swelling of my face & I felt like I had been sleeping on a feather pillow for days so I was all puffy. It was dreadful at the time, but I can definitely look back & laugh at this now!
By the following day my swelling had gone down (they gave me medication to make me wee lots so I was running to the loo all day!) but the nausea & vomiting had already begun… I was trying to sleep as much as possible in between all of this & still get some nutrition in. I was sucking on ice cubes, & then my husband came to visit me (he had been away for work up until now) so that made my heart a whole lot happier.
I got moved into a room on my own at this point as my blood cell count was dropping, & I had to receive 2 bags of blood. I actually managed to eat something & it stayed down which was a huge relief – they increased my anti-nausea & really were trying everything to help improve my state of mind. I began to have terrible nightmares & oftentimes woke myself up screaming – the nurses also came in & woke me up as they could hear me shouting for help. This is apparently a common side effect of chemotherapy & one I never wish to relive.
On the 25 January I really began to question whether I was doing the right thing. I was miserable, exhausted, nauseous & they had to replace the port needle as the one I had in since my admission had blocked. I had both vomiting & diarrhea & just didn’t know what to do with myself. I was exhausted, tearful & didn’t even have the energy to read messages on my phone, let alone reply to anyone. I had no idea the emotional strain this would have on me & I begged my doctor to just let me go home. I didn’t think I could carry on. My doctor said this would probably be my lowest day, but she gave me more anti-nausea & all sorts of other medication, as well as went to buy me some ginger biscuits to try get some food into me so I could take my meds. I couldn’t even keep water down, & it took almost 2 hours to finish 1 biscuit, but it was a step in the right direction. Plus husband came to see me again so…
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28 January 2019 – as well as being my sister’s birthday (sorry for trying to steal the attention again!); this is now my second birthday! The transplant was a simple affair. I was moved to the brand new transplant ward & received the first ever stem cell transplant for Myasthenia Gravis in South Africa! All the anticipation & concern, & it turned out to be such a simple procedure. The nurses were lovely & so patient with me. I chuckled when all 3 doctors arrived in full gown, mask, & isolation set-up. They said they felt like they were from Star Wars, & would NOT allow me to take a picture of them. The giggles helped me a lot though & we all celebrated as the magical unicorn blood aka my stem cells began to drip into my body. This was real. This was actually happening!
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And then, I could go HOME! Home to my husband, my fur-babies & I knew my mum would be arriving soon to help take care of me whilst my husband went away for work. I had been warned that I had to be very careful around people, & my husband had to sleep in the spare room to ensure I didn’t get sick. My dogs were not allowed to lick me & I carried hand sanitizer with me everywhere I went – there was a bottle in the kitchen, next to my bed, in the lounge, in my handbag & medical grade handwash in the bathroom. I was determined I was going to make it through this time with no complications.
