The all clear I got just before the transplant was probably one of the most significant and emotional days throughout this whole experience. I couldn’t have the transplant without the all clear, I wouldn’t survive without the transplant, so if the treatment before leading up to the transplant was unsuccessful it would have probably been good night for me. So just try and imagine the anxiety and emotions you would be going through while waiting for such unbelievably huge news like that, it was practically unbearable. We had no indication from December through to the end of February if the chemotherapy was working or not. I can’t explain the relief I felt, the relief we all felt when I got the all clear, it was all absolutely draining, physically and mentally, and I still had to go through a transplant.
After having relapsed, the idea of going back to work went out the window, I was so close to getting back to work that January and then it was just ripped out from under my feet, but I suppose it was the least of my problems. I have to say, my employers were so understanding about it, they basically wished me well, continued to support me and let me know that my job is there for me once I was better. They couldn’t have been any more supportive and to this day they still are.
As part of the Bone Marrow Transplant preparation I had to have a meeting about the schedule. Basically, before going in for the transplant a patient needs to have total body irradiation (TBI) and also a very heavy course of chemotherapy, and between the two, it’s aim was to kill off all the bone marrow in my body including the cancer cells, so that the new bone marrow could be transplanted in to my body with the aim to basically get rid of all the bad stuff. The chemotherapy and total body irradiation would be so strong, that without the new marrow, you wouldn’t actually survive.
The radiation specialist that I had a meeting with was probably one of the most robotic people I have ever spoken to in my entire life. Her face was completely unemotional, she spoke in an absolute monotone, no sign of any support or empathy from her, but maybe that’s just the nature of cancer treatment and the effect it has on everyone involved?
The point of the meeting was to explain the possible side effects of the total body irradiation, and to subsequently sign a form to state I understood what I was getting myself in to. Pretty much most of what she spoke about were all the different types of cancer that I might get in later life due to the treatment I was about to receive, and the percentage of likeliness of getting them. After the first one I zoned and stopped listening, I didn’t really feel the need to listen, if I didn’t have the bone marrow transplant I would die, so I didn’t really have a choice as to whether or not to have the treatment, so I felt why start worrying about what cancers I might get later when I just need to concentrate and focus on getting this treatment done and getting better. The percentages were all pretty low but still, it’s not so nice to hear that I could end up getting skin cancer in later life when I’m trying to battle cancer now.
Bone Marrow Match
I had been told that results are generally better if your bone marrow match comes from a sibling as opposed to someone outside of the family, and thankfully I was lucky enough that one of my siblings was a 100% match, it was great news, I needed all the help I could get to get through this. My brother, my BMB (Bone marrow brother) as I now refer to him as was a match, so we were good to go, the bone marrow specialist spoke to both of us about the procedure and everything involved so we knew what the story was.
Bone Marrow Transplant Meeting
A meeting was organised between myself and family, the transplant co-ordinator, and my specialist. It was a meeting that was going to discuss the treatment, the transplant and possible side effects and outcomes of it all. It was a meeting I really didn’t want to attend, it was too upsetting to even think about the stuff that I might be told, whether or not they think it would work, or whether I would make it, or what might happen if it didn’t work. I didn’t want to even think about it, I just wanted to get admitted for the transplant and get it done and skip over the meeting, but I couldn’t, I had to go to the meeting.
My transplant nurse knew I was really anxious and upset about the meeting, and when I arrived in she took me aside to let me know that she spoke with my specialist, they were going to keep the meeting as brief as possible and not get in to too much detail, which I appreciated. At the end of the day it is their duty to inform me of all the possibilities so I understood the necessity of the meeting. I just really felt that as the transplant was something I absolutely had to have, I didn’t want to hear about all the bad possible things that could happen, I didn’t see a point to it, apart from understanding their duty to explain it to me.
As I was seen to be so upset and emotional I was also sent down to be reviewed by a psychiatrist. I don’t really feel it was necessary, I wonder is it a common knee jerk reaction to do something like that if a patient is so emotional in these types of situations, regardless, after speaking with the psychiatrist I was deemed to be fine and definitely not in need of medication or anti-depressants or anything like that. Either way I wouldn’t have gone on anything like that, I knew I didn’t need them and now they did too.
I needed to nominate a carer and as my girlfriend was closest to me and we lived together she agreed to be my carer. After relapsing I was in such a serious situation, I wasn’t allowed further than half an hour from hospital, so I was quite fortunate to be living with my girlfriend in her family home nearby. I needed a carer to watch over me after the transplant and to be able to drive me to hospital in case of an emergency or any bad reactions I may have experienced. Nominating my girlfriend as my carer isn’t exactly what you want to have to do in your relationship, it’s not natural, but we needed to do it and that was it.
I was due to be given three weeks out of hospital to prepare both mentally and physically for the transplant, and I needed the three weeks, but I didn’t get them, I ended up only getting about a week. I had to be fitted for a head mask for radiation, during the total body irradiation you were fastened and secured to a bed and your head has to go in to a specially made mask as it was locked in to place so this took a couple of visits. Between that, hospital appointments, scans, treatments, it was cut right down, it wasn’t a good start, but that was it, time to be admitted, but not before my girlfriend and I had a few nights away in Druid’s Glen.
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NEXT BLOG: The Bone Marrow Transplant