Release

I’ve got to stand and fight
Release the pressure - Leftfield

I’m out!

I was so surprised, on Thursday, when the doctor suggested I might be ready to go home, that I had to ask twice what my blood counts were. I thought I’d got at least another four or five days to wait to get to the magic Neutros > 0.5 threshold. But by Thursday, I had already passed it. So, on Friday afternoon, they discharged me.

Obviously, I’m delighted, though still a little nervous that fever might yet drag me back inside. But let’s not dwell on the fears, and just be grateful for a pretty smooth transplant experience.

I’m at home. It will take a bit of time to work out exactly my recuperation trajectory. But my own bed, home cooked food... all good. Even being able to have a proper shower, now they’ve taken my PICC line out... I’m happy. And, of course, being with my family.

Alone

Faces look ugly when you’re alone
People are strange - The Doors

Isolated. Neutropenic. Enduring

While I feel good enough to write, here’s an update. I’ve been in “protective isolation” for 3 days now. The upside is that I’ve already seen 3 World Cup rugby matches. They tend to wake me a little before 6 to do blood tests and the games (because of the time difference between London and Japan) are all between 5am and 1pm. Perfect. Telly is about the extent of my ambition. I even enjoyed an episode of Top of the Pops from 1988, on some random channel-hop (and indulged my inner nerd by watching the proroguement case from the Supreme Court).

The downsides are best glossed over: a lot of nausea, a very fluid relationship with the bathroom, a temperature  spike...

But I knew before I got here what this part of the process entails. The aim is simply to be alive at the end, and rely on the fact that horror dims in the memory. Prior experience is proving unhelpful - I have another perspective, when maybe less awareness would be better. At one point, sitting on the toilet, my brain volunteered that, at the current rate, I could have 1,000 toilet trips, before they let me out. That thought didn’t make anything better. (Things have calmed down since... maybe I’ll only sit on the throne 200 times!) So, I’m trying hard not to overthink. Just to let the time pass.

My neutrophils are at zero, so the next milestone will be when there’s any evidence of them returning. That will be “engraftment”, and indicate that I am beginning to recover. That’s probably a few days away yet, but hopefully not as much as a week.

The point of no return

Fight like a brave. Don't be a slave. No one can tell you you've got to be afraid
Fight like a brave - Red Hot Chili Peppers

Day +1 ... and into the twilight zone ...

I had my melphalan on Wednesday. I was glad to get beyond the point of no return. Until the melphalan was actually going in, I half expected the whole thing to get cancelled again. I'm pleased to report that, as promised by the pharmacist, the anti-vom meds are indeed much improved on last time (specifically: Aprepitant), and I haven't been sick once. A little part of me thinks it can't possibly be working because it isn't bad enough (chemo-heads reading this will understand). But I'm sure I'll be disabused of that idea, soon enough.

When I harvested stem cells back in 2013, we got three times as many as we needed. Two thirds of them have been in the freezer ever since. However, my doctors aren't confident of the viability of cells that have been stored that long, and so we did another harvest last year. This time, no matter how much cajoling and pumping with expensive drugs, I barely produced enough for a single transplant (my bone marrow is a bit knackered). The decision was taken to use a portion of old cells, plus all the new ones. So many cells, in fact, that they divided the transplant over two days. So that gave me something to do on Thursday and Friday!

Oddly, then, some of the oldest cells in my body right now are also the newest.

Here's my cells (looking suspiciously like a side of smoked salmon), coming out of the deep freeze. Then they get a precise few minutes in a 37.5C bath, before being dripped back in to me. All over surprisingly quickly. In total we transplanted nine bags of the fellas.

So far, I'm feeling really much better than I had anticipated. And being at home, instead of sleeping in the hospital, is much better, for mind and body. But the trajectory, and the plan, is unchanged:. By the middle of the week I'll be without immunity, feeling crappy, and in protective isolation. This strange twilight will not last. Better to focus now on the middle distance: each day now is one closer to feeling better, even if I've got to go downhill now, before I can start going back up.

Plumbcentre

I got two strong arms. Blessings of Babylon. Time to carry on
The Riddle - Nik Kershaw *

Day -2

I had a "PICC line" (catheter inserted via a vein) 7 years ago for my front line chemo. But in those days King's insisted on a "Hickman line" (port inserted directly into the jugular) for transplant. Medicine progresses. Today I need only a PICC for the transplant, which is a lot less unpleasant (a hole in the upper arm, rather than one each in the chest and neck). Even the PICC insertion procedure itself is improved, since the location of the tip of the catheter is now monitored with ultrasound, instead of x-ray, making the process quicker and meaning it doesn’t have to take place in theatre.

I had a weird experience during today's insertion when I could suddenly hear a whooshing sound in my ear and a sensation like water was coming out of my ear hole. Apparently, this is what happens if the tip of the PICC is close to the jugular. It was a surprise to me, but not to the medics. Once the PICC was fully inserted, it stopped.

Hurrah for medical advances. I'm glad to be getting today's medical technology. Stem cell transplants have only been around for c.40 years. Before then, it wasn't possible to take stem cells from, and return them to, the blood. The preceding procedure was a bone marrow transplant, where the cells were taken from and returned to, the bone marrow itself. I can’t imagine bone marrow transplant would be much fun. Comparatively, stem cell transplant is a breeze.

So, plumbing now in place. One obvious improvement to human beings would be if we came with a port already built in. So that’s something I might ask God for, for Christmas.

The countdown: Tomorrow = "day -1" = chemo. I just referred to it, speaking to a myeloma friend, as “poisoning”. He suggested “cleansing” as an alternative description. I’ll go with that. The pharmacist tells me the anti-nausea meds have improved since my last transplant. So maybe tomorrow, too, will be easier than my memory tells me? After all these delays, I won’t quite believe it’s happening until the chemo goes in. My nurse compared it to sitting on a plane waiting to take off. Not a bad analogy - there’s always the possibility for delay or cancellation, until the moment the wheels leave the ground.

* I used a lyric from "Knock three times" for this post, but then I realised I'd used it before. And that will never do. So, I've edited, with an alternative. Not that Nik Kershaw should be a stand-in for anyone else. I loved this album in 1985 ...

Lviving

There are no lions in England
Lions - Ian Brown

... Stop Press ... Transplant next week !!! ...

I had another biopsy a couple of weeks ago. (I've lost count of how many that is now. 8? 9?) The good news is it was much better than before: a mere 10% plasma, as opposed to 80% a few months ago. (Normal is <5%.) Either things have improved dramatically, or the previous result was an outlier, or a bit of both. The somewhat perverse consequence, though, is I've been told I should proceed urgently to transplant.

Next week!

This brings dialm full circle. It is not easy to see where myeloma begins or ends;  with ups and downs often only definable in hindsight. And I deliberately masked some of that in the blog, by reconstructing a diary stretching back long before I knew I had anything to record. But there are precise dates, within the blur. One of those was that I first posted this blog the week before my last transplant - 6½ years ago. Not being a "noob" (as my sons would put it) means I have a fairly good understanding of what to expect, second time around. Lucky me! The running order is I'll have melphalan (poison) on Wednesday 11th; stem cells (salvation) on Thursday 12th; puking and shitting on those days and subsequently. Hopefully, I can spend the nights at home until the beginning of the following week. After that its the isolation room for 2 or 3 weeks. And then a couple of months slowly getting back on my feet. I'll keep the updates reasonably regular on here.

This new plan came as something of a surprise. Perennial uncertainty is one of the hardest symptoms of all, and its impact is quite difficult to convey, even to those who know me best and love me most. Can anyone, who doesn't live it, really appreciate quite what its like, never knowing what the next week holds? Less than two months ago, the outlook seemed very different. Our summer was just a question mark. I wrote on dialm:
"just when we thought we could make plans for the summer, we had to stop. The latest medical advice for travel plans is “wait a couple of weeks”, and “the timing might be better in 2 or 3 months”. I’ve been living with that, pretty much continuously, for years now. We wait a couple of weeks, but a couple of weeks never comes. As for the better times coming… I could be in the midst of a stem cell transplant in 3 months, for all any of us knows. It’s not easy."

I'm amused, I guess, to have been proved right. And thankful that we decided to ignore the medics' caution. We made the call that there might not be a better time than the present.

First up we rescheduled the weekend break that had to be abandoned earlier in the year (when an absence of platelets stopped me flying). People who don't know me well will wonder why I was so keen to visit Lviv in Ukraine. Those who know me better won't be at all surprised. I've wanted to go there for a long time, having read ages ago about its well preserved old town. It's one of those places with tortuous history - it has at various times been the 2^nd/ 3^rd/ 4^th biggest city in Ukraine/ Poland/ Austria/ Sweden ... and so on. Until last year it was tricky to get to, but now there are direct flights. It's not an expensive place to be, so we booked ourselves a suite at the Grand Hotel, and spent a weekend wandering the lanes, stopping for coffee, cocktails and food.

While sitting outside a Lvivian cafe, we got a guidebook out, and put together a really rather crazy plan. The week before, we had been puzzling over exactly where to go this summer, now we'd decided we would travel, regardless of the doctors.
"It's the right time of year to go to Namibia", said Marisa.
"As if we could possibly get a flight, at this short notice", I replied, flicking open an app on my phone to prove my point.
Much to my surprise, flights were available, for a price. And so we spent the next few days working out an itinerary. Three weeks later, we were there. Namibia has been "on the list" for a very long time, but a bit of forced spontaneity added to the thrill.

It turned out to be an amazing trip. Thousands of miles of dirt roads, beautiful scenery, stunning wildlife, great food and accommodation. Even when you've travelled a lot, you can still find places that are new and wonderful. We were mulling it all over, trying to compare it to some of the best trips we've ever taken, and best places we've ever been. It's right up there. And to top it all, it was hugely reminiscent of Zimbabwe, which was lovely for me (if not a little trying for everyone else!).

We have a map of the world on the dining room wall. Each time the kids go somewhere new, they stick another pin in the map. I don't want to collect passport stamps for the sake of it, but nine times out of ten I'd rather go somewhere new than revisit somewhere I've already been. Having myeloma has, if anything, added a little urgency.

I'm not unaware (or ungrateful) of the privilege in my life. I had access to an excellent education. I am supported by a world class medical system. I have some money. I have a passport that enables me to travel where I please... Living with myeloma has maybe made me less reticent about letting it show - anyone who wants to be envious of me can go right ahead. I hope I've (mostly) made the best of what was available to me - I've worked hard (after a bit of slacking when I started university), and Marisa and I have been adventurous - taking career breaks to travel, using our holidays to go to unusual places, and trying to give our children some experience of the world's diversity. Travel and work have always been two things that sustained me. One of the biggest impacts. for me, of illness and uncertainty, is when it stops me making travel plans, or hinders my ability to work. Which it does, a lot.

I was talking to a friend, in the park, a couple of months ago. I asked about her summer plans. She asked about mine. I explained I hadn't any, and why. She said she was sorry to hear that. A couple of weeks later, we were talking again, only this time I had just booked flights to Windhoek. It's difficult, when things change so suddenly, not to feel a fraud. I relayed this anecdote to my counsellor *.

"I know my friends don't think I'm making it all up, but I do feel like I'm being melodramatic."
"But it is a melodrama, Alex. That's the reality."
Yes, it is. We really did go from nothing to Namibia in less than 3 weeks. That is the bald truth. I'm lucky to get to go at all, of course. But that doesn't negate the challenges of living with myeloma.

And I really did just scope out and plan for a sizeable work project, only to have to send my client an email today, giving my apologies that I won't even be able to start it. A clear demonstration of the futility of planning. I've avoided making big commitments for so long, and when I feel it might be safe to do so, I get knocked back. It's incredibly frustrating.

So, I'm not looking forward to the transplant, and I can think of a hundred other things I'd rather be doing... but if it releases me, even for just a short time, from the unpredictability, I'll be happy. Let's say, on balance, that I'm ambivalent about it all. That would seem the most fitting response. One thing I will take away from the last 2 years is a greater understanding that living for now means having the confidence to take a risk, and not worry too much about the consequences. I've certainly learned something about living in the moment. We spent the last week of the holidays in Sussex, and packing up around the house - the garden littered with bikes, cricket bats, footballs, paddling pool, hammocks, deck chairs, a kayak - I was able to literally count our blessings. Today the new school year starts, Gyles has changed schools, and Lyndon moves up to the junior playground. He is exactly where Ben was, 6½ years ago - which is progress I wasn't even sure I'd witness.

Yes, on balance, the puking and shitting that lies ahead will be, in the end, well worth it.

"Lviv" is Ukrainian for lion. But we didn't see any lions in Namibia (or Ukraine). I have told the kids this is a good thing: gives them a reason one day to go to Africa again. We were privileged enough to see almost everything else, including wild leopards, and both species of rhinoceros. Lviv while you can, people. Take the opportunities as they come. Tomorrow, who knows.

* For a long time, I only ever had counselling occasionally, when things were really bad. After the depths of last year, I decided it would be wiser to incorporate counselling as a regular part of my treatment - through good as well as bad. Even when things are good, I find unpacking it and talking about it helps me to gain better perspective. At times like now, I'm almost euphoric, because I am aware that I'm managing to live. I guess my counsellor has seen it all before, but I feel almost bipolar, reflecting back on conversations she and I had, less than 6 months ago, when I was needing transfusions several times a week.