Days +1 to +19, the recovery begins....
Updated: Oct 18
This post picks up from the Transplant Day post. As stated, Transplant Day was, for the most part, uneventful.
The following days though, are a roller-coaster ride of epic proportions, in my personal experience anyway. How one tolerates the ride is highly individual, and my experience is just that, mine.
Days +1 to +2 were more of the same; uneventful. Nervousness started to descend as, by all accounts, +3 to +5 is normally when it starts to kick off. Both days were so uneventful I barely recall them. I do recall, however, the evening of Day +2, a Friday, Kerry was visiting, and we ate together in the Hospital Canteen - food standard probably 6/10, not that flash but edible with some nutritional value. Kerry departed, and I went to sleep after another boring as bat-shit Friday evening of shite TV. I felt completely fine! That night was mostly what had become routine by now, fits and starts of sleep with the odd bathroom visit.
At 4:00 am, on the dot, things changed. Things got bad, and I mean really bad.
In keeping with a conversation, I had with one of the nurses, a great guy that was like a Ninja when he came in the night to do observations. Nothing can prepare you for the shit storm, and I mean NOTHING!
Expect a bit of diarrhoea...
Sure thing, I've had diarrhoea before, no probs.
No, it can be pretty dramatic.
Yeah yeah, I've been O'seas had the trots, and it came and went with no problem.
Well, trust me, it can be pretty severe, but we're here to assist.
Sure, sure thing, I'll be fine; I mean, how hard can it be?
Holy fucking dooley!!!!! I think even documenting this; I am unlikely to do it justice. I've thought long and hard about how to document this, and the best I can come up with is there are 4 characteristics of the side effect of diarrhoea: Frequency, Volume, Urgency & Control.
At 4:00 am that morning, the morning of D +3, it started in the most profoundly extreme manner. that single event really wasn't that urgent, but it felt like everything id eaten in the preceding days had left me in one fell swoop.
Thereafter, and for the avoidance of this just being a post about describing every bathroom visit, the Frequency was high; the volume was incredibly high - to the point even of wondering where it was coming from; the Urgency was often very, very urgent, and the control was 90% controlled with a few instances of 'accidents'. Said accidents were extremely minor and handled with compassion by the Ward staff.
For 3 days, D +3 - D +6, the bathroom visits were relentless, frequent, mostly with control and always with some deal of urgency. The biggest issue, to delve into the realm of 'too much information', is the irritation and raw sensation of one's bottom. If there is any single piece of advice I could proffer, it would be to protect that sensitive area. I was given (too late) a mousse product, I think intended for old people of the 'infirm' category, to assist with cleaning, and I really wish I'd started using it earlier; it would've averted a significant amount of discomfort. In fact, that pain was probably the biggest single factor of the 3-day shit-fest that was most impactful; the rest was largely manageable. it really was a miserable time, but it was also just a time when one hunkers down and deals with the passing hours and days as they do that, pass.
As I was paranoid about developing bad mucositis, I munched on Sugar-free Icey Poles on the day of Melphalan and subsequent days, and that apparently helped. My mucositis got no worse than level 1, and I largely escaped that side effect, thankfully.
What did happen to me is Chemo induced Colitis. I had major abdominal pain for about 4 days necessitating a CT scan. According to the Haematologist, literally, all of my GI tract was inflamed. This exacerbates the diarrhoea as the mucosa in one's gut does not absorb any fluid, the fluid just transiting the gut, hence the volume being more than what one would expect, given the food intake - which was Zero.
I was placed on Nil by Mouth for 5 days, something I think I was quite grateful for; eating was the last thing on my mind. Having absolutely zero appetite made this a non-event. In fact, I literally ate nothing for about 9 days, with only a couple of supplement drinks on days 8 + 9.
Aside from the above, the days were mostly spent drifting in and out of sleep and literally waiting for things to pass/ get better. Easily the toughest 4 days I've ever encountered but already though, they seem in the distant past. Tough, inevitable days, but as I knew they'd pass and all storms end, so did my pootastrophic shit-storm end.
There was definitely a day when I felt markedly better; I think perhaps D +7 or +8. "better' is in context, though; what I mean is the diahorea had stopped, I was able to have Imodium, the suspected Bladder Infection had come to nothing, and the abdominal pain had subsided to manageable levels. Each day thereafter, I was better, and I knew that each coming day I would feel better still.
The most memorable issue was the constant connection to IV fluids and antibiotics and the 4 hrs infusion changes along with 4hrs observations; it all just became a chore and an irritation.
On or about D +11, it was decided that we could work towards being discharged on D +15. That meant a transition from IV antibiotics and onto Oral, a reintroduction of more solids into my diet and, at some point, the removal of my Bard PowerLine. The transition from IV meant that the last 2 nights, I was not connected to anything, and while this didn't really help with sleep, it was a great relief and the alleviation of what had become a significant irritant. Food was extremely small amounts, Cereal, Yoghurt, and fresh fruit. Still, my appetite continued to be non-existent.
On Day +15, I was scheduled to be discharged. The day started slowly; I was anxious for there to be some activity as I knew there were a few tasks that were required; a visit by the pharmacist; a visit by the Dietitian; a visit by the BMT coordinator; and last but most significantly, the removal of my PowerLine. I was told that the removal of the PowerLine would be done in another department, and I waited patiently to be taken there for the procedure. All the time, there was low-level anxiety developing about the procedure, wondering what it'd be like to have this device, that's been part of me for 6 months, removed. Would it be painful?
After a while, what seemed like an eternity of zero action, I asked one of the nurses, with whom I'd developed a great rapport, what was going on. She told me to leave it with her. Within 20 mins the door opened, and a Dr appeared with a 'kit' and proceeded to tell me she'd remove my Powerline right there and then. We chatted whilst she prepped the area by taking the dressing off and cleaning everything thoroughly. I inquired about the procedure and was a little surprised to hear that it is removed, pressure applied to the area where it enters the major vein in my neck, and a dressing applied; no stitches or anything. I asked about local anaesthetic and was told No. Over the 6 months of weekly dressing changes, it did hurt a little from time to time but didn't towards the end. It was hypothesised that my skin had completely closed on the cuff, and that made me think that the separation of the cuff from the entry site would be painful. She reassured me that it would be relatively painless and any pain would be extremely short-term. If there were resistance to removing it, she would stop and give me some anaesthetic. I asked if could pull it out. Whilst she appeared to appreciate the 'gnarly' nature of the request, this was emphatically declined. My last request was agreed to; that I could take the PowerLine home. I have this idea to have it framed; it was part of me, as I said, for 6 months and see it as an artefact that contributes to my treatment success. She appeared to appreciate the request, even if she thought it was a bit weird. Whilst one would ordinarily think the chatting eased me, I got more and more anxious about the procedure and again asked for local anaesthetic; again, I was declined.
So, she asked me if I was ready and asked me to take a deep breath and hold it. She told me in advance that when I was holding my breath, she'd remove it. Given it was 28cm inside my chest, I really didn't have any concept of what that would be like. I breathed in, held my breath, and barely felt a thing as she literally yanked it out of my chest in a single deliberate movement. It was gone!!!! She applied pressure to my neck and the entry/ exit site for about 3 minutes and applied a dressing, and that was it; I now no longer had my 'half a fucking hospital' hanging out of my chest. It was painless, literally. It felt slightly weird not to have these three tubes hanging out of my chest for the first time in 6 months!!
Within about an hour, I was taken for a chest X-ray 'to ensure that there were no fragments of the line remaining in my Ven Cava; all clear.
Kerry arrived, and we packed up and left.
21 nights exactly in Hospital. Including the toughest 4 days of my life from a health perspective. Mostly as boring as bat-shit, with a lot of hurrying up and waiting.
On the morning of discharge, my Neutrophils were 2.0!! Almost in the low-normal range, and I was not neutropenic. I was and still am very chuffed at that aspect of my blood count recovery.
As I sign off on this post, I am eagerly waiting for my review with the BMT team tomorrow to review blood work and recovery progress in general.
The days since discharge, D +15 to today, D +19, are generally marked only by little to no appetite and extreme fatigue. Even doing the simplest of tasks is exhausting. This is known to be a characteristic of the recovery and does not concern me per se, even if it is a little frustrating to some extent. The recovery is long and is a day-by-day process, and I continue to feel just a wee bit better on a daily basis.
That folks, is my story of an Autologous Stem Cell Transplant. A procedure that I am eternally grateful to have been given in a fantastic public healthcare system. The care provided was, and continues to be, of an amazing standard, provided by skilled and caring staff.