I can honestly say that in the two years I’ve been dealing with my cancer diagnosis and everything that has come with it, this has been the most difficult part of my journey so far. Following positive scan results, I was told my stem cell transplant would be going ahead. It was a bit touch-and-go at this point as I had the phone call saying it was all go and I hadn’t even thought about packing yet. I had 30 minutes to pack my life into a suitcase before I was needed on the ward to start my conditioning chemotherapy. Leaving home was really hard! I didn’t know what was going to happen to me, I didn’t know when I would be home again, it was like plunging into the darkness and not knowing anything at all.
My admission date was day -6 for me, where I had a heavy dose of Busulfan every afternoon for four consecutive days, ahead of a Melphalan infusion on day -1. The high dose of chemotherapy is given to obliterate everything, good and bad. It is only possible to give these doses when a stem cell transplant is to be done straight after, without this a person would not survive the chemotherapy. All the chemotherapy went well and I didn’t suffer any significant side effects which made me pretty comfortable leading up to my transplant. At this time I was finally familiarising myself with the routine of the ward. My day began at 4 am. Yes, you read that correctly. At this horrendous hour, the nurse would come in to draw several vials of blood, for the results to be back in time for the doctor’s rounds. I could then return to sleep until 7 am when the HCA would come in with the scales and weigh me. Then just as I drift off... breakfast is served and the nursing handover begins.
Day 0 was THE day - my “birthday,” as we patients call transplant day. As expected, receiving my stem cells was a very uneventful/anti-climactic process where they thawed and infused my previously frozen stem cells back into my body via my portacath.
Over the next few days, I was hit hard with ALL the side effects! My neutrophils dropped, I was severely nauseated, I lost my appetite and A LOT of weight, I became very fatigued, my mucositis worsened and my hair fell out. Most foods became quickly unpalatable so on day +1 it was decided I needed a nasojejunal tube inserted for supplementation because my nausea was so bad. The next few days seemed to all blur into one. Day +7 bought with it some excitement, blood noses, spiking temperatures and NJ tube blockages. This night was possibly the worst of them all, but after this things seemed to even out for me and my transplant engrafted not long after. At this moment I could see the end of this experience and I knew I was on my way to being discharged sooner than expected.
In the hospital, I knew I was safe and I knew that if I felt unwell, I would get immediate treatment. Room 16 had been my safe place for 23 days and now it was time to leave my little bubble and continue my recovery at home. It didn’t take me long to settle back in at home and I was incredibly happy to be reunited with Otten... who still hasn’t left my side since! What I did not anticipate was the emotional and physical struggles I have continued to endure over the following weeks. I realised that while I was in hospital I was too busy living day-to-day, anticipating the next side effects and how to manage them, trying to maintain a positive attitude and distracting myself from my present reality. The fatigue was on a level much more intense than anything I had previously experienced. Slight physical exertion, like simply taking a shower left me panting and feeling exhausted.
By the third week, I gradually began to regain some strength and energy. I began to move my body by taking walks and starting some gentle yoga. During this time I made numerous visits to the hospital for blood tests, fluid top-ups and magnesium infusions. My appetite began to return, but very slowly! All positive signs that I am on my way to making a full recovery.
I am now a few days out from “the big scans” and scanxiety has well and truly set in. I don’t usually give my scans this much attention but these are to see if the stem cell transplant has done its job. The end of another treatment and approaching progress scans always makes me feel like I’m back at the beginning of this roller coaster, starting all over again. I believe I feel this a little for every new treatment I start. Evidently, I’m not really starting again, far from it in fact. It has been a long and rough road, but hopefully it will be well worth all the physical hardship and suffering.
Until next time,
Chi x
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