It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
I don't seem to be able to do regular blogs. My INTJ brain thinks about writing an update, then over-thinks why it will be rubbish, and fairly quickly gets distracted by something more interesting. Then, I start getting messages from people wondering how I'm getting on, perhaps concerned that my lack of blogging is a sign that all is not well. Well, OK, things are "fine". Still on my usual cocktail of drugs - CyA, Acyclovir, Letermovir, Septrin, magnesium, vitamin D - but the CyA dose will now start to decrease as we are T+65 days or thereabouts. I'll explain about CyA, lymphocyte counts & immunity in the next post; bit bored of that for now to be honest. Blood counts all stable - Hb 116g/L, WCC 3.16, Plts 175, Neutrophils 1.99, Lymphocytes 0.63. My Hickman line is still in-situ and working fine, still gets in the way when I sleep. Occasionally, the dressing pulls on what little chest hair I have left (it was basically a rug prior to chemo) and wakes me up in a cold sweat as my dreams turn to nightmares about it getting pulled out by accident and me dying in a pool of blood as my right atrium empties itself in my bed. If you were asleep, how would you ever know you were slowly bleeding out? Apologies to anyone else with a Hickman ... don't worry I'm sure this can't really happen. This blog post really goes on and on for ages, so feel free to skim. But I need to write "as one". In summary I live a blissful life for about 50+ years convincing myself I am bullet proof and will live to 100 before I get told I've a serious bone marrow problem, get a bit upset and struggle to find the right time to tell anyone. The next few paragraphs just milk it a bit, but that's the gist. I've not written that much about getting the diagnosis previously but the events of that day will be scarred in my brain forever. You'll remember that I had been feeling tired for a few weeks, but hadn't considered anything was actually 'wrong'. Just thought I was un-fit, or had spent too much time indoors over the COVID winter. My family kept telling me I looked pale, but that made no sense to me as I had no reason to be anemic. There's only two ways to really lose blood - gut or urine - and I was 100% sure I hadn't lost blood. I couldn't be anaemic - I was eating fine, and getting all the iron, B12 etc. you might need, so to my brain it was impossible that I might be anaemic. In an earlier post, I explained how I told a GP friend that it felt as if I was unable to "off-load" oxygen to my muscles and wondered if I could have long COVID - without actually having had COVID. If I'd sat with a doctor, even a medical student, who'd took a half decent history, they might have twigged fairly quickly that I had a bone marrow problem. Looking back after I was diagnosed, I remembered that in early January when I had my 2nd Pfizer Covid vaccine, that I had ended up with a 1cm bruise at the injection site. It was a perfectly round bruise and I just assumed a bigger blood vessel than normal had been pranged. About a week later, I developed a whole load of petechiae (tiny pinprick haemorrhages under the skin due to low platelets) on my forearm - caused by the shoulder strap of a heavy rucksack as it slid down my arm when I took it off. They were very distinct and I knew that they didn't mean anything as they were localised just to an obvious site of skin trauma, and weren't anywhere else. They disappeared over the next hour or two and I forgot about them. I only remember these facts in retrospect. By chance the week before I was diagnosed, as I was starting to think I should get my bloods checked because of the tiredness, I got an 'out of the blue' email from my GP telling me to book in for routine bloods. I didn't know GPs did routine bloods like that but it all seemed quite convenient and made myself an appointment for the following week on Thursday. Two days before diagnosis, I spent the Sunday afternoon cleaning my bike. Mainly because I was still convinced there was an obvious reason for feeling tired when cycling uphill - the most likely culprit (rather than cardiovascular physiology) was that there had been a build up of grit and dirt on my chain. I spent a good 2 hours sorting my bike out and polishing my gears and chain. I can remembering thinking 'that will sort it'. I'm squirming as I'm writing, about how after 30 years of medicine I could miss such an obvious explanation to my tiredness. Don't judge me too harshly. Sunday night. Lying in bed, on my side, reading my kindle and I realise that for the last couple of nights I've had to "re-arrange" myself to get comfortable. I didn't have any pain, or discomfort, but I lay on my back and gave myself a good examination. I didn't have any obvious lumps but I couldn't feel my testicle on the right side as I had what I was fairly sure was a hydrocele. A hydrocele is basically a collection of fluid around the testicle that can be a sign of infection, tumours etc. but equally might be nothing. Testicular cancer tends to present before 50 years age, but can be painless and just cause a hydrocoele. There's nothing embarrassing about a hydrocele or swollen testicles. Monday. When I woke and showered I realised my right testicle was possibly a little sore, and decided I should get examined. I had a day of webinars and meetings that were obviously far too important to cancel, and decided I would simply go to A&E first thing Tuesday morning. I knew I would need an ultrasound scan at least, and I could get my bloods done at the same time. I know I should have seen my GP first, but going straight to the hospital (where I worked) seemed more time efficient for everyone, especially me. Tuesday. I'm rostered to be on call tonight on the NICU, so don't cycle to work as normal, as I take the car when on call at night in case I need to return urgently. Go to my office, say a quick hello to colleagues and immediately go to A&E which is almost empty. Present myself to the nurse sitting at the triage desk who seems a bit irritated with my arrival. "Yes" she says abruptly, beckoning me forward. "What's wrong?". "I've got a hydrocele" I say in what felt like a fairly matter-of-fact tone. "What makes you think that?" she replies, slightly sarcastically I think. "Because I'm a doctor" I reply. She raises her eyebrows, clearly irritated that [yet again] it's just a middle aged bloke complaining about his scrotum and not a true emergency. "Alright, check in at that desk there." She didn't apply to work in A&E to deal with those sorts of minor genital irritations. Now, the fact that I'm a doctor doesn't really explain why I thought I had a hydrocele but it seemed the simplest explanation. I took a seat, dialled in to zoom for the NICU team handover meeting, waited an hour whilst nothing happened in A&E - zero patients, zero activity - and just as I was about to pull rank to go and tell the medics to finish their tea and toast, a junior medic took me into a room. Full examination, bloods, ECG - agreed I had a hydrocele and needed an ultrasound. I waited 2 hours (I'd taken my laptop & rucksack knowing waiting was likely so busied myself sorting emails), but radiology was really busy, and I was told it'd be simplest if I could make my way to the hospital on the other side of town for a scan. The medic offered to organise a taxi to take me there, but I remembered I had my car (as I was due to be on call in 6 hours time). Just before I walked out the door, I asked the medic if any of the blood results were back. "I've only got the ferritin back, but it's raised" he said. Seemed odd to me, a full blood count normally gets processed in under an hour but there was no apparent news on my Hb. Ferritin can be a sign of iron-overload or chronic infection. Mine was about 4-5x upper limit of normal. I asked the medic what he thought, and what could possibly connect that sort of ferritin result to a hydrocele that had only been there for a couple of days. "Well, it can be a sign of chronic inflammation he said [yeah, obvs, I am a doctor] and it's possible to get unusual infections, like atypical TB (tuberculosis) in the testicles." I felt more than a little bit irritated with the suggestion that I might have been engaged in dogging sessions with badgers, but alarm bells were starting to ring. I drove across town to the other hospital, get to the car park, realise I don't have any money on me so won't be able to exit the car park when I need to be on call, so drive and park a way away down a back street. Mid-winter, I have no coat (I was supposed to be on a nice warm NICU), arrive on admissions unit shivering, go to the reception desk. Receptionist: "oh, hello Dr Pants, how are you? I used to work on maternity reception, I remember you. Why are you here?". Me [with pride] "the biggest pair of bollocks you've ever seen" in a voice loud enough that all the ward could hear. Actually, I just whispered 'hydrocele' sheepishly behind my mask. Get given a cubicle, asked a series of questions by the admitting nurse, walk of embarrassment down the ward trying not to spill my bowl of steaming p!ss and then get examined by urology medic who agreed an ultrasound was needed. This is now about 3-4 hours after my bloods and I knew the results must be available. Asked the medic and was told "Haematology are looking at your bloods at present, and the haematologist is going to come and chat to you this afternoon." Massive alarm bells. I asked the results so far - Hb 85 and platelets 75. Clearly my bone marrow was seriously ****ed. It was starting to look like I wouldn't be able to work the night on NICU. Ring a colleague, swore them to secrecy, and told them to sort my night out. Medic asks me thoughtfully if I want to call anyone to be with me when the haematologist comes. I decide I can handle this alone for now. Just give me access to google and the blood results and I could do a good impression of adult physicians. Hmm. Whilst waiting for the ultrasound, my medical brain was now busy diagnosing. Could be lymphoma, or leukaemia (less likely) - seemed unlikely. Didn't really feel that sick, had no lymph nodes, lumps or hepato-splenomegaly, night sweats etc. Hydrocele didn't really fit with that diagnosis either. Could be testicular cancer, but if this had already spread and caused this degree of bone marrow failure I was probably incurable. Could it be a small primary tumour somewhere else, that had metastasised to testicle and bone marrow? Finally, get my ultrasound scan, testicles look pretty normal. Impressive, I'd have said, although the sonographer didn't use that actual word. Some hyperaemia (increased blood flow) but nothing much, and a pair of simple hydroceles. No lumps. No cancer. I think I felt just a tiny bit reassured at that stage, and decided I had lymphoma which I knew was treatable having had two friends diagnosed and successfully cured over the last few years. Sh!t happens I decided, but it could be worse. Turns out, it was. More importantly, I'd failed to make the diagnosis before the specialist arrived. That's always a bit irritating. Haematologist again offers me to contact someone else to be with me, I decline. Yet again, they do know better than me. They explain that the blood film also shows some blasts - these are 'primitive' white cells that are pre-leukaemic - and that I'll need a bone marrow biopsy. Likely diagnosis was myelodysplasia and not lymphoma or leukaemia but I don't think I really heard the MDS term straight away. Check my diary, tell the haematologist I can come for my bone marrow tomorrow (surely it would be a day case procedure, and I'd get a short GA and some morphine) but reassured that local anaesthetic will be fine, and they'll do it now. A very calming, experienced haematologist does the bone marrow trephine. Lots of lignocaine but still hurts. We have nice chats about staff we both know having worked locally in the same hospitals for 30 years. Surreal. I tell her about my research. Her eyes don't obviously glaze over. Clearly a professional. Platelets are pretty low, and I can feel the blood trickling down my back. A few tears trickle down my face, but I've still got my mask on so they get absorbed by that before I roll back over and anyone could see I might have got something in my eye. Quickly remember how my daughter tells me that "tears are only weakness leaving the body" so pull myself together and sneak a very quick look at the trolley with various pots of my bloody bone marrow in them. Surreal and deeply unpleasant. Haematologist disappears with what looks like half my bone marrow on a trolley, and I'm alone in the room. Ears ringing. WTF just happened? The nurse returns, gives me my appointment for the next day to get the results in clinic, some antibiotics in case the hydroceles indicate infection (all swabs were negative btw) and I get up and leave saying thank you to the staff and gesticulating to the receptionist that all is fine, just a pair of massive gonads. I can't go home, it's 4pm and I'm supposed to be working the night, so I text the family, tell them I got lucky and someone else needs to work the night for me, and that I'll be home soon. Walk to my car in the mid-winter rain still just wearing my shirt. Not really sure what to do but I remember in the movies that you can bang the steering wheel with your hands and shout f***! So I do that. But not too hard in case I bruise my hands (low platelets, safety first). Really not sure what to do next, but start driving away from the hospital. Somehow, without real planning, I end up in the car park of a small country park, turn the engine off and start sobbing. No tissues, tears and snot all over my cheeks. It's now 4.30pm, getting dark and the park is closing. I suddenly realise I'm surrounded by hundreds of parents with small children looking at this strange man in a car on his own crying. Quickly realise I look like I've committed a terrible crime and just buried the body, so I exit car park and pull up in a housing estate. Again, without any real conscious thought, I get my phone out and record an audio diary. I've listened to the first few seconds again, but not all of it, or the other 10+ hours I've recorded since then. Don't think I'll ever play them or let anyone else ever hear them. I finally get home for supper at a believable time, eat with partner and youngest child pretending everything is normal, and we sit together to watch TV. Probably Vikings. Realise with some sadness that I'll probably never get to be Ragnar Lothbrook now. Desperately want my youngest to go to bed so I can tell my partner. Time's ticking on, the hole in my back from the bone marrow is starting to hurt and soon one of my other children will be getting in from work. I need to tell my partner, but suddenly find myself alone watching TV and decide to quickly google my diagnosis - I'd just recalled it wasn't leukaemia but likely MDS. Get some out-of-date stats from the US that basically say that I've had it, and suddenly I realise my partner's upstairs having a shower getting ready to go to bed. Knowing I have a large and blood-stained dressing on my back that would need explaining, I charge upstairs, brush my teeth, jump into bed before they do, and open my kindle. Partner gets in to bed, also starts reading kindle. I stare at the pages clicking back and forward (to make it look like I'm reading) whilst I work out the best opening line. Think through various phrases and words that convey the seriousness, but also indicate that I'll be fine. I was at the hospital today darling ... [obviously]
Realise with horror that partner has not only finished reading, but is snoring deeply. F***! What to do? Wake them up or tell them in the morning. Decide that morning will be OK. In fact, start thinking I could perhaps go to clinic to get my results, whilst pretending I'd just gone to work again. Try and read more on my iPhone under the duvet. My lack of knowledge and google combine with endless stories of woe into a night of utter desperation and misery. Shed some more tears whilst avoiding any noisy sobbing. Try and listen to a podcast. What would be appropriate for the situation? Basically, I can't sleep, realise I've probably had it, and tell my partner as soon as they wake in the morning. Email my haematologist before clinic to ask that they don't tell my partner just yet that I'm going to die, go to clinic, get the proper diagnosis, realise I'm not about to die but that bone marrow transplantation is on the cards .... and the rest is history. I told you this blog would go on a bit. You didn't have to read it all.
17 Comments
Lidia Giudici
12/13/2021 09:00:34 am
So glad yo read you!!!!!! Please, take notice that que are waiting for "breaking news"!!!!!!
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Lou W
12/13/2021 09:07:07 am
I read it all. Keep on writing.
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Kate
12/13/2021 11:05:50 am
Unbelievably real account of your story. Keep telling it x
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Janette
12/13/2021 11:45:00 am
You are so brave . Big hugs to you xx
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Sissel
12/13/2021 12:22:44 pm
❤️
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Sam Oddie
12/13/2021 02:12:36 pm
Hey Nick. Powerful read, this one. ‘Enjoyed’ it. Give my best to MrsProffyDrPants, as we know she is deffo not known. Thinking of you from time to time. Hoping day 100 is a straightforward one.
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Liz
12/13/2021 03:35:19 pm
Read every word Nick, it's brutal & hilarious all at the same time. You're brilliant, always enjoy your words, such an incredible insight & so honest. Stay strong xox
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Maz
12/13/2021 04:28:13 pm
Love your heartbreaking honesty so many parents of babies you have cared for will 100% relate to ugly crying, sleepless nights, dr google and random in thought out walks/drives.
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Ramani
12/13/2021 08:16:59 pm
Thinking about you prof. Very brave. Hard hitting read yet hilarious. You need to keep writing! Terrific skills. Wish and pray for your good health always xx
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Toni
12/14/2021 02:07:05 am
Nick, I can't imagine how hard it must have been for you when you were given your results and you were keeping it to yourself until you found the right time to talk about it. Thinking of you xxx
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Sue G
12/14/2021 02:17:14 am
Very ‘real’ and honest blog Nick. Keep going, we are all rooting for you! You’ve got this!
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Sam J
12/14/2021 12:40:49 pm
Oh Nick, it must be so hard. You are so brave to tell your story. Enjoy hearing your updates. Thinking of you often x
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Raul
12/15/2021 08:42:42 am
Nick: so sensible, realistic and painful. GO!
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Chris vdA
12/16/2021 01:16:05 pm
Amazing vivid flashback story you wrote Nick, very unfortunately no fiction...
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Michelle
12/20/2021 03:18:57 pm
How could we not read it all? It was a honest and compelling read. Best wishes to you and your family and wishing you a peaceful Christmas
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Caroline
12/26/2021 02:54:21 am
Just catching up, i think we are all humbled by your honesty, and pretty impressed with you writing skills! Very moving thank you for recording your thoughts. Hope youve had a good Christmas xx
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8/2/2022 04:06:45 pm
Tiktok anlık takipçi satın almak, tiktok düşmeyen takipçi satın alma ve takipçi sayısını arttırmak isteyen sizler sitemize girerek tiktok takipçi satın al hizmetinden faydalanın. Takipçi satın almak hiç bu kadar kolay yoldan olmamıştı.
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