The Haematology Consultant Appointment 12th April
Updated: May 7, 2022
The days between my last procedure and the appointment were agonising, brutally so. The agony of not knowing, but knowing, was excruciating The medical community is so very well adept at saying nothing and everything at the same time. There must be somewhere in their training, either formally or vocationally, the skill of getting detached from the emotional side of things and staying engaged with the scientific, and no doubt caring aspects of their job(s). That sounds a bit dichotomous, but I doubt they ever don't care, it's just that they don't really show it. Perhaps controlling emotion is a highly developed skill that is massively under-appreciated.
When contemplating writing this, I thought of a few ground rules. One of those was (largely) I wouldn't mention names. I think online anonymity is a good thing but, as colleagues pointed out, I've really done a shite job of being anonymous given my email address and phone number are here. I'll change that later, but the horse has bolted in real terms. I'm not sure about the legality or even the courtesy of mentioning his name, but hopefully, as there's no ill intent, slander or libel, it'll fly under the radar, I will talk about this guy though. I've met him twice thus far. He's impressive, calming, authoritarian, speaks with gravitas, is direct, demonstrates a soupcon of empathy and appears to care quite a lot. Strikes me that, out of all of those things, I just hope in addition, he knows what the fuck he's talking about, I get the feeling he does. Turns out his digital footprint is tiny. Comforting in that, one assumes helping people be better is more important than online bits and bytes and I'm ok with that.
Dr Matthew Greenwood is the Director, Stem Cell Transplant Service, RNSH Dr Matthew Greenwood is Director of Stem Cell Transplantation at Royal North Shore Hospital in Sydney. After completing Haematology training in Sydney, Dr Greenwood completed a Leukemia/Transplant Fellowship at the British Columbia Cancer Agency and a Canadian Stem Cell Fellowship with Prof Peter Lansdorp at the Terry Fox Laboratory in Vancouver. He is Principal Investigator and Co-investigator on a number of clinical trials in transplantation and haematological malignancy and maintains an active research interest in stem cell biology.
Upon the day arriving to see him, nerves were high, a sleepless few nights had preceded the day. I went off to work and agreed that I'd pick Kerry up in a Cab en route. We arrived at his rooms and there is a great recurring sense of 'normality'; that descends. What I mean is, shite hair, pale of complexion and generally not looking that well is the norm for people in his waiting room. There are a lot of shite haircuts atop generally warm smiles and a sense of camaraderie. It is reassuring in a strange way to know I'm not alone.
I said 'normality' as, when I first attended the North Shore Cancer Centre, I found it initially distressing. To see that sign was almost the ultimate reminder/ sign/ affirmation that something serious is going on. Even though I was still in the diagnostic stage at that point, it had its effect.
Now I'm in his waiting room and the surrounding 'brothers and sisters in arms' were also strangely reassuring in that I am not alone. Regardless, at that point, I was still hoping Greenwood would say 'it's all a mistake, here's some penicillin and off you choof.
Alas, it was not to be.
Kerry and I sat down. A convivial moment of greetings and pleasantries, before he asked 'how are you?'
'Please call me Matthew'
'I'd rather not, I have great respect for your training, your dedication and your vocation, it suits me better to pay you respect and address you by the title you've worked hard to earn.'
No response but a steely glare, was it criticism, cynicism or disbelief? Who knows, I didn't really care at the time and I certainly don't now.
'I'm ok, feel ok in general, think the steroids are having an effect. But mostly the waiting game is the worst, it's been 3 weeks now. 3 weeks of pretty intensive tests, some clues have been laid but I'm consulting Dr Google and it's a challenge not really knowing'.
'Well Innes, we do know and I can now tell you, you have something called Mantle Cell Lymphoma. It's Cancer of the blood, and you're pretty sick'.
Amongst many leaflets I was given. The above post it, written by Greenwood’s hand l, will never leave me. It will haunt me. It also serves as reminder that every day hence, I will now say FUCK CANCER!!!!
There was a pause. Not sure if it was for effect or to gauge our reaction. Kerry squeezed my hand, we waited for more. The next bits are recollective, they may not have happened in the order I type and they are as accurate as I can recall.
'This is currently uncurable Innes, the treatment you are about to embark upon is, to put you in remission for as long as possible.
'Please ask any questions as we go?'
'Currently, the Median Survival rate is 6 years.'
'You have a MIPI of 6.4. MIPI is........The Mantle Cell Lymphoma International Prognostic Index (MIPI)'.
Me, thinking to myself....what? WHAT? WHAAAAAT? WHAT THE ACTUAL FUCKING FUCK!!!!!!!! 6 YEARS, fuck off, you have to be kidding me.
Please note; that if you're inclined to think 6yrs is good, think about what you were doing 6y ago!!! To me, it seems like yesterday. Only 6y!!! And the rest of this is going to seem melodramatic, read on at your peril.
I have not yet got my head around what MIPI is, to be frank. and I have yet to really get into that. Save to say, a 6.4 ain't that flash. Online there are many outdated statistics and old research, it is easy to get completely sucked beyond the event horizon of the vortex of doom. So, I've kind of avoided that one for now.
I felt Kerry squeeze my hand, I couldn't look at her, I felt the tears welling, 6 FUCKING YEARS. I won't be 60. I won't meet grandkids, Fuck I probably won't see my Lads get Married. SHIT, Miles won't be 20!!!!!
All of that happened in a split second as he looked for a tissue, and seemed genuinely concerned that there were none. I desperately tried to hold it together.
'There is a genetic mutation called P53 mutation. It's bad because it's been shown that that mutation means a person is less responsive to treatment. You do not have that as far as we've seen thus far, a tiny silver lining
'Fucking great, I don't have a mutation....Roll out the barrel, we'll have a barrel of fun'.
'Ok, let's talk about the treatment'. 'This is currently incurable Innes. the Treatment is designed to put you into remission. It's called the Nordic Protocol. So-called because of studies in NORDIC Countries'.
'No Shit, Sherlock'.
And I can't specifically remember what and when he said stuff, but you'll get the gist.
'The protocol looks to extend remission to 10-12y and there are some who do much better, even up to 20y'.
Hmmm....20y sounds pretty peachy; at this point, 10-12 sounds good.
'So, I have to ask, are there any fertility concerns?'
A nervous, 'no?'
'Because, we have to take care of that if there are, you will be infertile after this.'
A shrug of the shoulders indicates that we can move on.
He hands me leaflet after leaflet then goes on to explain, this is rough shit. Primarily he seemed concerned about me and my work. You'll struggle to keep working during this he said, really struggle. Public transport is out, you'll be severely immunocompromised he said. You'll have days when you don't want to get out of bed, and days you can't get out of bed!!!
You'll have lots of side -effects.
'Will I lose my hair?'
'Between 1 week and 3 weeks after starting'
'You'll have 2 types of Chemo, 6 rounds, 3 weeks apart, so approx 18 weeks Chemo, you'll then have BEAM and a Bone Marrow Transplant'.
At this stage yourself. There is a possibility that if it isn't successful will look for a donor, but that's so far down the track let's not waste time on it'.
The BMT (also referred to as STC), is rough. Very rough. There's prep, the procedure itself, and inpatient recovery is 4 weeks!!!
'Fuck me, nobody goes to the hospital for 4 weeks in 2022!!!'
'Yes they do. 5 weeks including the prep'.
The at-home recovery will be 3 months. Strap yourself in, this is an 8-9 month process, ALL GOING WELL.
At this point, I'm barely taking it in. Honestly, it's in one ear and out the other. He's giving me leaflets, pamphlets and other 'lets'.
'Dr? What happens if this is untreated?'
'Interesting question, can I ask why you ask?'
'Well, I feel fine. I'm ok. I don't feel ill at all. I've read that people live with Lymphoma for 20y, maybe 25'.
'OK, NOT this lymphoma. Remember the 6y conversation?'
'Untreated, I'd say 6-9 months, you may not see Christmas!'
What, Fuck off, that can't be right!!!!!
'Is there anything I've done to cause this?'
'No, nothing. In fact, we don't really know what causes this. we know how to make it 'better, that's about it.'.
Much more conversation but you get the gist. Devastating news!
'I've got teenage lads, what do I tell them?'
'That's not my job Innes.'
Ok Dr, what would you tell them, if you were me?
'Innes, you're going to look very different very soon. You are not going to look the same, tell them the truth, they're old enough to know.'
He gave me steroids starting the next morning. In and of themselves, that's a blog entry.
Off we choofed into a blur of emotion, tears and Kerry being stronger than any person should be asked to be. The evening was tough, the next day is a Blur.
I explained to work. They ARE fantastic, making no bones about supporting me. Work thus far (day 15 of cycle 1) is challenging. Chemo fog is real. I am working from Home pretty much 100%.
I (we) explained to the Boys. That's perhaps a blog entry.
Even writing this has been tough.
The steroids next entry, perhaps.
Oh.....and this is important......MCL is apparently a hotbed (maybe I made that up, but it is an active topic) of research and even Dr Greenwood said, we never know what's around the corner with research, trials and clinical investigation for this disease,
So, remission is the target, the fight is on, and I'm up for it.
Come on MCL, give me your best shot, YOU FUCKER!!!!!