Ok dokey. There's a lot to unpack on this one. There's pain, discomfort, fascinating stuff and a bit of humour too. Let's be clear, though, that the humour is Thommo humour, so you may or may not find it funny; you may even find it offensive.
So, where did we leave it in the last post?
I'd just had the BIG INJECTION. It had had almost immediate side effects. I was warned to make sure my trousers were loose. There was another older, definitely more gentlemanly than me patient, who'd also had the BIG INJECTION.
Before we kick off, some comments.
I really dislike talking about personal biological stuff...I squirm at the notion of talking about bathroom habits. I've been known to go home from work to use the bathroom. I avoid public conveniences like the plague. I find it uncomfortable just even reporting side effects of chemo, whether is talking about constipation or the other word that I cannae spell. I also accept that Nurses are probably oblivious to this and that there's nae dignity in being a patient. I think that patients need to leave their dignity at the door. Actually, let me correct that.....I'm certain that Nurses do ALL they can to maintain dignity at all times. However, poo and wee is something we all do, and people like me just have to get over themselves. Patients probably need to leave their pride at the door. I'm sure any Nurse friends will correct me if this is wrong. I think I'm saying that it's only one's own sense of pride and dignity that's harmed; the care that's provided doesn't give a shit about poo and wee (and blood and spew).
I've had a decent night's sleep, especially after what transpired after getting home, about 30mins after the BIG INJECTION. There were a few trips to the bathroom but nothing too challenging. I rock up to the Apheresis Unit and tell them to 'bring it on'. All done with a smile and laugh, I figure that trying to be polite, light-hearted and looking for humour is the best way to approach my current litany of shitey issues; as well as it being the best tactic to foster good relations with my care providers.
Now, given my antipathy for all things toilet, my body is actually pretty well tuned I like to think. It is starting to make noises and grumblings that I recognise for what they are, but am concerned about the unfamiliar timing. Also, the very last thing I did, was to go for a pee. In the preparation meeting, I was told that I will be 'using the bottle'. Here was me, internally saying, 'aye, that'll be right, I can hang on, there'll be nae bottle action'. Plus, they'll let me go and do another after inserting the cannulas, before connecting me, nae bother.
I get up on the bed, and it starts; within seconds, nae pause for pleasantries; the Nurse is prodding the nook of my elbow/ forearm and looking for veins. 'You're a bit dehydrated; we told you to hydrate!!'. 'Whatever, get on with it' is my response, only internally, mind you. Now for those of you that are not au fait, Cannulas come in different gauges. I have had approx 40+ cannulations in recent months and at least 60 blood tests on top; I'm kinda used to needles, although I still turn my head when I'm getting stabbed. There is an inordinate amount of prodding, slapping, massaging, tightening and re-tightening of tourniquets. I realise they're looking for the biggest, healthiest vein. Then, BANG. I feel the biggest 'small scratch' I've ever felt, and some wiggling around that is quite unpleasant, and the discomfort mostly subsides with a 'that's that one done'. The process is repeated on my left arm, with significantly less manhandling, although the 'wee scratch' is still bloody painful. I can only surmise that my right arm veins, being where 95% of the action of recent months has occurred, have become a little recalcitrant, and my left was slightly more willing. Anyway, I glance down, and I'm shocked to see that I literally have 2 single-use straws hanging out, 1 from each arm. They are right at the nook of my arm, and I suddenly start to piece together why, should I need it, that a bottle is being discussed. bending my arms will be close to impossible, or at the very least, only minimal movement. Still, I'm definitely still in the mode of 'fuck that, there'll be nae bottle'. I guess by now, you can see where this is going.
Now, the science bit; well, as much as I understand it. The injections I have been taking are to overstimulate the growth of Peripheral Blood Stem Cells (PBSC) to increase the density of these cells in my blood so they can be harvested. The BIG INJECTION is like a turbo boost to make even more and to help them leach into the blood from my bone marrow. These cells are critical to my transplant; it is these cells that I will receive back on the 21st of September to regrow my bone marrow. My bone marrow will be completely destroyed during the conditioning Chemo called BEAM; this starts on the 15th of September. The nurses refer to them as 'Baby Stem Cells'. One assumes this is because they are cells that can be turned into whatever the body needs, in my case, bone marrow, and this is also why they call them 'rescue cells'. The day of transplant is also referred to as my 're-birthday', the day I am rescued. BEAM is an acronym for the drugs I'll be receiving: -
B – Carmustine (BCNU)
E – Etoposide
A – Cytarabine (Ara-C, cytosine arabinoside)
M – Melphalan
BEAM is given to kill off any residual cancer cells finally and think) to destroy my bone marrow, where new Cancer Cells may be produced. The reason I said 'I think' is that, I'm unsure of whether bone marrow destruction is a primary objective or whether it's a side effect (desirable or not). Due to the intensity of BEAM, it is an inpatient process, and I will be admitted 6 days before the transplant on the 15th; this is called Day minus 6 (D -6). The side effects are profound, and it is this that I fear most. Losing my hair (again), even though it is only very sparse peach-fuzz at the moment, is the least of my worries. My aversion to toilet challenges is definitely something I am going to have to get over.
To finish this off, I’ve been asked by many friends, 'why use your own cells if they are fucked with Cancer?' I do have a great circle of friends, don't I? Well, 2 reasons......1) the cells are baby stem cells and haven't had time to mutate to being Cancer cells (I think), and, 2) I am a bio-identical donor, not bio-similar. That means that the issue of host v's graft disease is not in play here; HVG is the process of rejection as I understand it. My Haemo info,s that rejection is the single biggest issue that spans all types of transplants. An Autologous Stem Cell Transplant negates this complication.
I'll be in hospital for 3-4 weeks depending on how quickly I achieve 'engraftment', and my new bone marrow starts to function and produce the correct levels of blood components allowing me to leave the hospital. I will be completely immunocompromised for quite some time and have been told that infection is the greatest risk in this whole process.
Back to the apheresis unit.
Before I've finished saying internally, 'fuck that,' I am connected to the machine. The machine extracts my blood from my right arm, processes it by way of centrifugal force to extract my stem cells, and it is returned to me via my left arm. That's about all I know/ understand. I knew that my complete blood volume would pass through the machine several times, at least 4.
So, by now, some of you are asking, 'hold up, if he's having something removed (a volume of stem cells) what is that replaced by, to keep his total blood volume at an acceptable level?'. Good question!!! that is where the big bag of clear fluid that was hung on the machine comes in, easily a litre and a 1/2 of what I assume is mostly saline, but I know other drugs/ additives are used to keep the balance correct etc. The point is, it's a LOT of fluid. you definitely now can tell where this is going.
I feel a little queasy and quite uncomfortable. I am given Maxolon (anti-nausea) and some gastro meds, can't recall the name. the process starts. It seems like the process is one that requires some level of 'tuning' of the machine. One assumes that the rate of extraction is dictated by many factors and that needs to be managed. I have a complete 1:1 relationship with the attending nurse.
At this stage, though, aside from the discomfort, which I'll get to, a feeling of reality washes over me. You see, I have tried to approach this whole shit-show with a modicum of humour and mostly tried hard to stay positive. One side effect of this approach is that sometimes the gravity of the situation is overlooked or simply passed me by. Also, whether or not my approach has affected this or not is unknown, but, whilst the Induction Chemo has been a real challenge, now that it's in the past, I've largely moved on and have forgotten most of the bad stuff. Well, it doesn't dwell on me anyway. I'm dying to get my hair back and get back to a healthy day-to-day existence. I am longing to feel the wind on my face and the sun on my skin (although with great care). I realised, though, at that moment, that I am actually fighting for my life. This process is serious; it's massive and will give me a much longer remission than if I didn't have the transplant. The seriousness of the situation suddenly struck me, much harder than it has seemed since Greenwood told me, in April, that I wouldn't see Christmas if I didn't have treatment. The feeling of my mortality was profound. I got really upset and told myself to 'hang in there, Thommo, you'll get through this'.
I was so uncomfortable by this point that I actually thought, I couldn't do it. My arms were literally locked straight at a funny angle, and my tummy was grumbling like crazy, along with a foreboding feeling of the need to pee; damn, that huge bag of fucking fluid that I could see draining into me. At his stage, I've been 'on the machine’ for (let's call it) 3/4 of an hour. I ask the nurse (I deliberately am not naming her), how much longer?
You see, in my ‘research’ running up to the session, I’m sure I’d read that some people are harvested in a couple of hours, and a lot are 4 hours. So, at approx 9:00 am, I’m thinking about 12:00 or soon after being the worst case. She turns and peers into the machine and looks at the screen and turns round and informs me ‘probably 4:15 or 4:30’. What? WHAAAAT? What the fuck did you just say? Another 7 ½ hours? You have to be kidding me? You can’t be serious? There’s no way I can do that, no way in hell. The pain was now excruciating. I think I actually had a wee tear in my eye.
Now, in hindsight, I realise that I was just acting like a big pork-chop, but I honestly felt as low as I’ve ever felt; I just could not fathom how I could do that. I think, also in retrospect, whilst it was uncomfortable, there was a large degree of self-pity too.
I was suddenly snapped out of my self-pity by my now worryingly urgent need to pee and my tummy was not settling down. There was a few minutes of ‘what the fuck happens here?’ Along with, ‘they’re just going to have to disconnect me, ‘there’s no way am I losing my fight to ‘the bottle’.
Oh! Meanwhile, I am further pissed off that, remember the other patient, the older more gentlemanly fellow, he’s just drifted off to sleep and is lying peacefully while the maelstrom of my bodily functions is conspiring to completely wreak havoc with my sense of pride and dignity. Fucker!!!!! How can he be sleeping through this? I couldn’t understand it. He’s taken something. Old bastard!
I ask the nurse if I can go to the loo, please. She just looks at me incredulously and says ‘no’. We told you, Innes……do you need the bottle or the pan?!?!?!? Eh? What? Pan? What the fuck are you talking about; there’ll be nae fucking pan! I surrender and say ‘the bottle’ 😕
Now, at this point, I need to inform you that, to my memory, I have never ever been assisted to do a wee wee. EVER. But that was soon becoming a harsh reality. Remember the loose trousers?
The curtains were drawn, I was ceremoniously stripped of my joggers, and I was assisted in the process of peeing. I found the whole process a huge HUGE embarrassment and even felt a little upset. I must state at this point again, that nothing the Nurse did was anything other than completely professional and routine. My sense of embarrassment was completely self-generated. To cut a long story short, it was all over in a couple of minutes, and the curtains were opened, and it was back to the process.
I would say that, and I don’t know if this is physically possible, but, having done a wee wee, my tummy felt less like a problem; can a full bladder push on your bowel? Who knows?
I looked over, and the ‘other patient’ was still sleeping! Bastard!!!!! I think I may have drifted off at that point, for all of 10 minutes, but it was the best 10 minutes ever!
That process was repeated every 45mins to an hour for the next 4 hrs or so, and I have to say that I did get more and more comfortable with it, such was the complete professionalism of the Nurse. That fucker over the room, though, I reckon for my 5 instances, he only needed ‘the bottle’ once. I started to really dislike him.
It should be noted that every time I did use ‘the bottle’, there was great relief. I mean it also seems that every hour or so, that fucking huge bag of fluid was changed for a fresh one too. However…..the tummy problem was gradually and slowly increasing, getting more and more uncomfortable.
At some point, Kerry breezed in unannounced. What a welcome sight. Introductions were made to the Nurse and the Nurse in charge. The scene pretty much changed; there was a great deal of laughter and joking about stuff. I actually thought it was a bit rude to the other patient, the noise we were making. But I quickly recalled how he was sailing through this and a resounding ‘fuck you’ washed over me. Fun was what I needed, and it was a great coping strategy.
There was definitely one more bottle incident, where I was ridiculously contemplating what the protocol was now my partner was here; does the Nurse help, does she help? The notion quickly passed, and the incident passed, like the others without any issue, and all was well. Well, kind of. The pain in my tummy was now unbearable.
probably, another 45 mins or so passed and I asked the Nurse. ‘I need to go to the bathroom?’ She said ‘the bottle’ again. NO!!! I sternly said I must go to the bathroom; please disconnect me. I don’t care if it means I'm here longer. There is some humour about the incident, but I'm sure you can just imagine. Now 2 Nurses are trying furiously to disconnect me, and I'm trying to hold on. When they told me I could get off the bed, I was told to ‘take it slow’, but there was nae fucking danger. I practically sprinted. In short, all was well.
Having said that, though, I just cannot imagine what that would’ve been like with ‘the pan’. Honestly, I cannot imagine it. Perhaps it is just routine for them also, but also remember, I’d had the BIG INJECTION, it would’ve been a complete pootastrophe! I can’t even bear to think about it. I soo hope that me and ‘the pan’ are not acquainted EVER. I don’t want to think about transplant time. Me and ‘the bottle’ can be passing acquaintances but not ‘the pan’.
Now, onto the other fellow. There was a huge amount of hilarity going on, in a room it has to be said that’s quite serious, and I’d felt remorseful about disturbing him at the same time as being pissed off that he was sailing through this. He’d even been hand-fed a couple of sandwiches by his Nurse (the head Nurse). Why did I point that out? Good question!!! Whilst she was the head Nurse, she was also the head of hilarity with a sometimes borderline inappropriate humour. It was her that told me that basically ‘my blood was fucked’ and that’s why they’d had to delay the process 3 times.
Oh god, I hope I can do this justice.
He called for ‘the bottle’.
The head Nurse then dutifully drew the curtains. Kerry was sitting by my bed at this point. Previously, when he’d used the bottle, there were some noises that I just tried to blank out or not process; I really didn't need the visual. This time, however, with all the previous hilarity and my own new found comfort with the bottle, the atmosphere was different.
In a curt voice - 'now remember Derek (not his real name), all you need to do is lift your bottom'.
'Now, LIFT YOUR KNEES!'.
'Ok'. but accompanied by many soft whelps and grunts probably similar to noises I might've made, to be frank. I mean, getting yer troosers yanked off whilst trying to do an upward plank on now numb elbows takes some effort.
More 'whooaaahs' and 'oohhs' and 'I don't think that's it'.
'Derek, you really are quite a big boy; you are ok'
Completely inappropriately, Kerry and I know are stifling giggles like a pair of school-children.
'Nurse, that's not it!!!'
Yes Derek it is it; you are a big boy; it’s all in; please continue; I'll wait outside'.
Well, the poor bastard was, like me, fighting for his life and here's me laughing at the muffled noises and connotations I'm mustering in my mind. It felt very inappropriate at the time but seems like a hilarious episode in retrospect.
The rest of the time was pretty uneventful. I had to be asked to be disconnected again to visit the bathroom. Without ceremony, I duly was, and I had to return to the machine for the last phase, which was to harvest some plasma.
The count of the cells is only confirmed by the lab after they have analysed the harvest. I was told, however, that they think they'd got enough, the widely agreed minimum of ~2.5 million for a successful transplant.
I felt sorry for 'Big Boy Derek'; he was softly informed that they felt he was a 75-80% chance of having to re-visit again for harvest to get more. Hah, that'll teach you for sleeping on the job, briefly crossed my mind. I briefly get chatting to Big Boy, and it turns out he's been fighting his battle for 15 years and is also Greenwood's patient. He shared that, as I have learned elsewhere, his Cancer started as one variant and has morphed into another. He is 69, 15 years older than me. I think briefly of the next 15 years and contemplate what battling this for that length of time looks like. Sadly, I couldn't really think about it for long.
Kerry and I choofed off home, and within an hour or so, I got a call; the lab had confirmed the 2.5 million number; I could relax for the weekend and take it easy.
That is the Harvest process. Well, how it was for me anyway. Not an easy one, I have to say, but I am eternally grateful for it being completed. And I can't express enough gratitude to the Apheresis team for helping me and caring for me. I will never roll my eyes at the news of a Nurses' strike; they simply can't be paid enough, I don't think.
Some rest beckons, along with a raft of tests to ensure I am still fit for transplant.