Day 50 Reflections
You can prepare physically for a transplant, but emotionally? That’s much more of a challenge.
I’ve been a patient at Queen Mary Hospital now for 50 days. At the onset we knew this would be challenging, intense, and plucking hard. We were somewhat mentally prepared for the physical and medical procedures, and Graft vs Host Disease (GVHD) risks. Heather kept you as up to date as possible during this difficult time. Check out previous posts here: all systems go, in sickness and in health, day zero: a quick update, tell me more about transplants, day 14, we have engraftment, and Graft vs Host Disease.
Looking back, I really wasn’t prepared for the mental, emotional, and overwhelming feelings that have engulfed me on a daily basis. This post might be a little raw and emotional, but I feel the need to share to our community of supporters and followers, who have been so incredibly encouraging while following our journey.
First off, let me just say, the staff at Queen Mary Hospital are amazing. The doctors, nurses, student nurses, ward assistants, and even admin staff are all incredibly caring, kind, and very proactive in my care. The hospital has provided clinical psychologists, nutritionists, and physiotherapists, who check in on me weekly. I can’t say enough about the kindness, compassion and care I’ve received here.
It has been an overwhelming journey, and still isn’t over just yet. When I first arrived, I was doing okay. There were days of introductions, procedures, routines, and meeting all of the staff for assessments. I was watching movies, TV shows, etc. Then we started treatments: three days of chemotherapy, three days of full body radiation (six treatments in total, AM and PM), the bone marrow transplant, followed by two more days of stronger chemotherapy. Then while feeling the effects of chemo and radiation, the transplant finally engrafted, and we’ve been dealing with GVHD since (review Heather’s earlier posts above). So physically and medically that has been hard.
But then the emotional and mental aspects would completely overwhelm me and I spend most days just crying and crying. Isolation is hard and the room (when not filled with doctors and nurses) is incredibly quiet. I have two sets of double pane windows blocking sound from the outside and then a small double-doored vestibule leading into the room which cuts out almost all sound from the rest of the transplant ward. Following the transplant I haven’t been able to focus much on reading or watching shows or writing here, but I do play lots of music to break through the silence.
Whenever I see Heather during visiting hours, I burst into tears. There is the woman I love who loves me, who I only get to spend a couple short hours with, feeling so desperate for the human touch and love. It was never enough time. But in a stunning act of mercy, the hospital saw how much comfort Heather was for me and they removed the strict visiting hour restrictions for her, allowing her to come and stay as long as she could. The Hong Kong Hospital Authority is known for being incredibly rigid and uncompromising on visitor protocol, so we were astonished by this unexpected gift.
Overwhelmed by how much I love her, seeing how much she loves me, just wrecked me daily. Heather has been my bedrock, my partner, and the love she has shown me during this journey has been so deeply moving. I would have the same response when our sons would visit me on their own as well. It is surely difficult for them to see their father cry so much in front of them, but they’ve held me and loved me just the same.
I’ve had medical setbacks, complications, and pricey new treatments to combat the GVHD issues. There was my fall on day 14 (post transplant), a CT scan of my GI tract, an endoscopy, and a recent bone marrow sample — all things which emotionally affected me. I have been so anxious and tearful before, during, and after the procedures. I was on a good track to be discharged last week, but had a discouraging setback with my gastrointestinal tract, causing quite a delay in any discussions of discharge. After getting all nutrition in fluid form in my Hickman Line, my task was to start eating some solid foods. I overdid it one day, not realizing how much has changed in my body and its ability to digest food. Unfortunately, I learned just how easily everything can send me back to square one with my digestive tract. So many disappointed, frustrated tears.
These last few weeks I have been so homesick, missing the place Heather and my sister, Heidi have been working so hard to prepare for my eventual arrival. Any setback or delay causes me to feel sorry for myself, disheartened, and yes, starts up more tears. Heather really has been burning the candle at both ends, visiting me and comforting my fears, anxiety, and tears, then going back home to work on the list of things that need to be in place before I can return. I just can’t believe this wonder woman I married.
Lastly, there are so many times I get encouraging messages, prayers, and comments from so many of you. Even though I haven’t had the strength or energy to reply, all of them made me cry, thinking of the sincere encouragement and love coming my way in the texts, emails, messages, and DMs. I so appreciate the encouraging messages and even cards and letters sent to the house. I can’t have anything from the outside brought in while in isolation, so Heather reads them to me over video chat at night which has been amazing. There was even a Disney podcast out there which gave me a shoutout of encouragement at the end of the Podcast. I mean honestly, who am I to have such a loving and encouraging community of beautiful people around the world who love me and send me regular messages, emojis, prayers, voice messages, emails, DMs, and cards? That in of itself has just been beautifully overwhelming, deeply touching, and incredibly humbling. More tears just thinking about it.
I just want to say a deeply sincere thank you to everyone for partnering with us on this journey. When I am eventually discharged, we’ll still have a long road ahead. I will continue to be immunocompromised for at least 6-12 months post transplant, with regular checkups two to three days per week back at Queen Mary Hospital’s Day Ward, and quarterly bone marrow extraction samples to be taken and tested at the molecular level to assure no cancer cells begin to grow, that only the healthy new cells reproduce in abundance. During this process I’ve lost all the antibodies from vaccinations or acquired through previous illnesses. This means I’ll be at a high risk for measles, mumps, flu, chicken pox, and all other viral and bacterial infections, and won’t be able to fight them off easily or rapidly. All my follow up appointments the doctors will advise when I should get new vaccinations as my immune system recovers completely.
Another piece of fear and anxiety comes from knowing anytime I have a fever, a new skin rash, or experience any gastrointestinal or digestive issues, I will need to report immediately to the nearest A&E (ER) where I’ll be admitted back into the hospital for monitoring and treatment. We know this will happen. It will likely happen multiple times. But still, I would very much prefer not for this to happen.
Today, Day 50 in isolation, Hong Kong is under a Black Rain warning. There has been major flooding throughout the city, including at the hospital where I am, which has had all the elevators filled with water leaving staff and patients with only stairs to reach where they need to go in this 24-story building. Unfortunately it has meant Heather, Heidi, and the boys cannot visit because it isn’t safe or wise to make the trip.
The journey continues.
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