I was admitted on Thursday the 23rd of February, I would basically be in the transplant ward of St James’s Hospital for a period of approximately 5 to 6 weeks depending on how it went. Between 5 and 6 weeks, stuck in a hospital room, I didn’t like the sound of that at all. I had my own room which had it’s own air filtering system, so there is no fresh air from outside, you don’t have windows in your room you can open or anything like that as they have to ensure the air is absolutely clean. Even the thought of not being able to breathe fresh air for about 5 or 6 weeks was difficult enough to think about, let alone having to go through the transplant itself, and being stuck inside my room that whole time.
Below is the calendar I had up on my wall in the hospital to count down the 6 weeks to try and help me through. I told myself to expect 6 weeks, but it turns out I was admitted for exactly 5 weeks, getting out on the 30th of March, a week less than I had prepared for which was huge.
Chemotherapy & Radiation
I had three days of chemotherapy, very heavy duty chemotherapy to really give me one last absolute blast before the transplant, it’s nothing I hadn’t gone through before so I didn’t find it too difficult.
On to the radiation which I found much more distressing. It’s basically total body, head to toe, and I had it over two days. You basically get clipped down on to a machine, straps are tied over you to hold you in to position, my knees were taped together, my head was clamped in to position by a moulded mask so that I couldn’t move it, and they shape your body in to what seems like a box position.
I will never forget the sounds from the machine when it turned on, or the smell that came from it, it was an awful feeling lying there thinking of what it was doing to my body, yet I was in there as it was part of the process to try and save my life.
Whatever chance I had of having kids naturally went straight out the window altogether after the total body radiation.
The Transplant – Day 0
They called transplant day day zero, and basically you have the full body scan around day 100 to see if the transplant worked or not, so we knew the scan would be around the start of June.
For my brother who was donating his marrow the process would be different to mine. He was admitted to a different ward upstairs the day before the transplant. On the morning of the transplant he goes down to theater and basically what happens is, the doctors insert one needle on each side of his pelvic bone to remove the liquid marrow. A few hours later he would wake up back in his ward again feeling a fair bit sore and a fair bit drowsy.
The marrow was then sent to a lab in the hospital to be tested again to make sure it was suitable to be given to me, and then brought down to my ward to be given to me.
For me, the transplant itself was actually a pretty easy process, most people seemed to think it was an operation, but for a bone marrow transplant I literally lye in bed and receive the marrow through the drip over a number of hours and that’s basically it.
A nurse needed to stay with me while it’s happening and throughout the day as sometimes patients can have bad reactions to it so they monitor you closely. The transplant was easy but the reactions and side effects that can happen after it during the following days and weeks are the hard part, not the transplant itself.
The picture below shows the red bone marrow on the drip as it went in to my body.
Thankfully the only reaction I had when the marrow was going in was what looked like a bite or a spot appear on my hand, which disappeared a few minutes later, I’ll take that. It was a bit of an anti-climax at the time, the bone marrow transplant sounded like this huge thing yet the process on the day seemed so easy, and thankfully it was, but I had no idea what was ahead of me for the remaining 4 weeks.
My BMB (Bone marrow brother)
When my brother came to after the procedure, it was explained to him again not to visit me downstairs until the next day as he would be feeling quite weak and unsteady on his feet so he could fall or hurt himself. So what’s the first thing my brother did soon after coming to? Yip, you guessed it, he came to see me. He lied to the nurses in his ward by telling them he was just getting a drink and then he came down to see me.
I remember my girlfriend sitting beside me in my room and we couldn’t help but laugh when we saw my brother come stumbling through the door. It was great to see him, we found it funny that he did the one thing he was told not to do. It was really a funny sight, he wasn’t really with it at all, still a bit out of it, he looked a bit drunk or something.
His skin color was awful, it was really yellow, he actually looked terrible but still had this big goofy grin on his face, dressed in a blue gown wearing what I can only describe as an adult sized diaper, here to check up on me that I was ok. I will never forget it, it’s one of the only times I found something so funny and that I can laugh about while I was in for the transplant.
The nurse found it funny in a sort of a here we go again, they never listen type way, but at the same time she got him to sit down as he was so unsteady on his feet. The nurse explained to my girlfriend and I how even though donors are told numerous times that they need to stay in bed and rest post procedure and not to go visit the person who received their marrow until the next day, they have such a strong urge to do it so end up doing it most of the time anyway.
He was ordered back to his ward to go back to bed so off he went, the nurse went out to check he was making his way ok and found him sliding against the wall a bit so she popped him in to a wheelchair and wheeled him back up to his ward, such a funny memory.
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NEXT BLOG: Post Transplant, my last blog before Christmas