It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
I was diagnosed with MDS a year ago to the day – life looks rather different now. The monoclonal antibody infusion seems to have sorted out the EBV debris left by Amanda. She still hasn’t apologised. The graft versus host disease, GVHD is still active but less so. My palmar rash is under control. My liver function tests are almost back to normal, and I no longer need twice weekly infusions of anti-fungal medicine. Instead I just take 3 mahoosive tablets a day that are hard to swallow. Swallowing is still a big issue, but better than it was. Gums still a bit white. Taste still not right. Whenever I eat, small mucoceles pop up on my soft palate. 2-3mm in size and feel prickly like you’ve got a pip or seed lodged. A bit painful, but then settle and gone a few hours later. Combined with not feeling hungry, and the pain on swallowing, I haven’t been drinking enough. The registrar in clinic 2 weeks back told me my kidney function was worse and I needed to drink more. No problem, I said, but I just kept on drinking 2 glasses of pink milk a day. Then last week the results were worse. Apparently, I was in “AKI” – acute kidney injury (urea 10, creatinine 140). I hadn’t told the family as, unlike my bone marrow, I have 100% faith in my kidneys. They just need to put their big boy pants on and filter a bit harder. Unfortunately, the specialist nurse rang up and spoke to my partner last week and then I was in Big Trouble. What next? Don’t know. Plan is to slowly reduce the steroids, then if GVHD sort of OK, slowly reduce the CyA. Then at some point, another bone marrow, various blood tests, and then when off the CyA I can start having monthly COVID vaccines. Thankfully Boris has defeated COVID for us, but it’s looking unlikely I’ll be able to return to work in June. Hopefully the team can manage without me a little longer...but it’s going to be touch and go for them I fear. GVHD rash on my palms. Basically it's just Mx Donor cells having a bit of fun. Nice to meet you, and thanks for re-building my immune system but can you just leave my mouth and hands alone please? There’s a danger following my last blog, that I could veer into autobiographical story telling …could be dangerous.... I’m usually quite private and can only share this openly because it’s just words on a computer screen, and you can’t see me. Also, you don’t know it’s me because I’ve used a clever nom de plume. You think it’s me, but really, is it?
[Insert sad face emoji] I really miss work. I miss the buzz, the excitement and challenges, the sense of camaraderie when the sh!t hits the fan; speaking to parents, working out best management for the babies and always making the right decision (that’s what INTJs do). I miss morning meetings, chatting with the trainees, coffee with my buddy, lunch with colleagues. [more emojis] I miss getting called in at night – genuinely. Appearing at 2am to intubate a baby plays to the hero complex EVERY doctor has, whether they admit it, or not. Most of all I miss the banter with the nurses. For most of my time at medical school I wanted to be a paediatrician. My first SHO job was in paediatric oncology. I spent my 1-week summer holiday prior to starting, reading a paediatric oncology handbook. Probably a waste of time. On my first day we were taught how to access a Hickman line in case a child presented with sepsis. The Hickman lines were the same as the one that still dangles out of my chest now. Weird. I still remember the faces, names and diagnoses of some of the children who I looked after and died, who I tried to make smile by licking the tip of my nose whilst I took blood. Being ill has really made me think about what it must have been like for the kids and their families. Initially I had no interest in being a neonatologist. I thought most neonatal consultants were probably autistic, unable to cope with children. Might still be true I suppose. The main attraction of a career in paediatrics to me seemed to be the opportunity for mucking around, more banter, not wearing a white coat and avoiding all the pomposity you see in adult specialties. Honestly, if we no longer see patients without wearing scrubs or shirt sleeves rolled up, why do they park their Porsche in the car park, and then ponce around the hospital in 3-piece pin-striped suits and shiny brogues? Aren’t M&S cotton-nylon-mix beige slacks good enough for them? I loved neonates as soon as I first started but was too embarrassed to tell my best buddy because we had already agreed that neonatology was for the emotionally retarded and we were above that. I poo’d my pants the first few days and nights. It was terrifying, but we were immersed immediately. I worked a 1:3 for 6 months. I’m still friends with my two buddies from those times, 30 years ago, one now a PICU consultant, the other an adult ICU consultant and me in NICU. All bases covered. This involved 24 hours on, 24 hours off and then …. a week of 9-5 days and then a Whole Weekend Free. I felt like a key part of the team, I think that’s often lost these days. Very quickly you got good at practical skills. If you messed up the veins, your mate coming on next only had one person to blame. The middle-grade doctor didn’t sleep in, if you didn’t learn to intubate, it didn't turn out well. The nurses, as I’ve said before, look after you, save your bacon and pick you up when you fall. But you’ve got to be nice. Without them, you are toast. I’ve been watching ‘This is going to hurt’ on the TV. Many surgical consultants were like that in the early 1990s. I worked for several arrogant pompous twats, but I also remember many amazing, inspiring and caring consultants. Edmund Hey inspired me to become a neonatologist. His introvert, analytical brain fascinated me. He was creative and innovative, but worked excessively and obsessively, and his family suffered because of that. Those that didn’t know or work for him couldn’t understand why he was so adored. To those that knew, he was a genius. His legacy in terms of clinical practice, academia or inspiration for trainees is unrivalled. Ed died unexpectedly in 2009 and I wept. I still have the email he sent me the evening before he was found dead, encouraging me to do some research study. I still don’t understand why he had such an impact on me, but he was inspirational. It is now 365 days since I worked in the ‘intensive care area’ of NICU. That’s the place I want to be. I enjoy the other areas and research but caring for sick babies and families is where my heart is. I don’t think I’ll ever get back to that now, and it feels sad. 365 days ago, I went to do the job I love, prepared to work the night, but instead came home at teatime with a touch of cancer. At medical school we had lectures on psychiatry but I didn’t pay much attention. But I do remember the very first lecture. Kurt Schapiro walked into the lecture theatre quietly as we were all loudly chatting and nobody initially noticed him. A short, bald man, wearing a black university gown, just standing quietly behind the lectern. As we all slowly saw him, the lecture theatre fell silent. And he just stood there slowly turning his head as he peered over half-rimmed spectacles looking at us. Felt a bit weird. And then, [cue strong German accent] he said, “I suppose by now most of you have realised, that life isn’t fair”. And that is the only thing in psychiatry I ever learned, but it has stayed with me forever. Life isn’t fair. Not for sick babies, their parents, kids dying of cancer, refugees, Ukrainians ... Life isn’t fair, but it’s been fairer to me than most, even now.
34 Comments
Tomit
2/24/2022 11:52:19 am
I can lick the tip of my nose too (just) but I guess that proves beyond doubt that the oldest sibling is the adopted one afterall! 😅
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Janette Proud
2/24/2022 12:00:41 pm
I am so pleased you are making progress . Your powers ,your magic, your skill,your inspiration ,your care shown to parents was amazing. Even under extreme stress myself and other parents I talk to feel exactly the same about you .They broke the mould when you were created destined to be an truly inspirational doctor . I remember the many nights you were called in to see to your favourite baby who was acting up a little . I also know very clearly if it wasn't for you she would not be here .You went above and beyond on many occasions. When I nominated you for neonatal doctor of the year it came from the heart. I was so proud when you won. I know the staff miss you very much. If you don't get back to practice it will be a very sad day for future premies. The silver lining is if you have to work in research I am sure that through whatever research you do you will make the outcome for future premiers much better.
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Michelle
2/24/2022 03:25:43 pm
So right, life’s not fair. I hope this doesn’t rob you of doing what you love as a job. May just take you a bit longer to get there (is there an emoji for patience?)
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Nadia
2/24/2022 11:06:21 pm
Good morning. That’s my perspective sorted for today. Probably for the foreseeable. On point as per usual.
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Ruurd
2/25/2022 01:39:59 am
Life isn’t’ fair is so relative and could not be illustrated better then the way you do Nick. Happy to hear the fight in your body is moving the right way in small steps with ups and downs just like life of a premie. Take care and stay strong!
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Helen
2/25/2022 02:06:02 am
Life is not fair . Take one day at time.
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Monica
2/25/2022 07:55:25 am
I can only imagine how sad it must be for you not to be doing the job you love dear Nick! Especially when you are so good at it! Neonatology needed someone with your emotional intelligence to inspire us all!! Not only about the incredible academic knowledge you’ve passed on but also the example you’ve given us on compassion and care!! You have been an inspiration to many of us, even more now by sharing your journey with us so honestly and candidly!! As many have said take one day at a time and be kind to yourself, as well as to your kidneys by drinking loads!!! I’ll keep praying as many more are doing for you 🙏🏼
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Anup
2/25/2022 09:04:03 am
I am so sorry that you are having to go through this.
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Val
2/25/2022 12:39:09 pm
Sharing your experience, and it sounds hellish, is making us all reflect on all the people/ patients we have come across over the years- a good thing. Stay strong and drink lots. He was right, life isn’t fair...thinking of you XX
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Rachel
2/27/2022 09:36:14 pm
Meaningful work can be a balm. You writing this is also a sorting-hat sort of thing and I appreciate it, unanswered questions and all. Muddle through and don’t forget to drink water and perhaps a potion from your local witch? Yarrow tea? A little boneset poultice?
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Kate Blake
3/25/2022 02:37:04 pm
Hi Nick
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Caroline king
11/28/2022 12:41:50 am
Again, belatedly, thank you Nick for sharing your thoughts and letting us know how you are doing. The replies you get here are a fraction of the responses you could get due to your amazing influence over the years. You have affected so many people in a positive way, not many can say that! However the list of stuff you are still doing sounds like a full time job! Thanks for still being so involved in the world of neonatology xx
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