It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
Taking a stack of oral tablets every day is a pain, but banana flavour energy drinks - Fortisip - actually help them go down and disguise the taste. Some are really foul. Cyclosporine smells like weed (nurses told me that). Chewable Magnesium is disgusting. But aside from that minor irritation, a bigger problem is smell and taste. I can’t now stand tea or coffee which is quite upsetting as I used to love drinking that. Many other foods also taste different and I’m now really struggling with hospital food, so family bring in an evening meal which makes all the difference. Many foods I can’t stand the smell of – just about any food smell triggers mild nausea, even food I could eat. Lips tingle and mouth feels strange, but thankfully I didn’t get any real mucositis or ulcers. Of course, cyclosporine is the guilty party, I’m sure. As punishment for getting a platelet count >50 (it’s now 111 woop woop!) I get to give myself Tinzaparin injections every day to stave off blood clots.
Slowly getting used to be completely bald, but the only mirror is in bathroom, so I only see myself once/day when I shower. Deeply disturbingly, I seem to look more like my younger brother than me with no hair. When I pull the shower curtain back, I suddenly find he's been watching me. Worse still he’s also naked. Rather alarmingly, the groin swab has grown Pseudomonas. Interestingly, it seemed to start as a small boil with no swelling - remember back when it started, I had no neutrophils so there was no ‘pus’. Many of us on NICU have seen Pseudomonas infecting premature babies, presenting as a rapidly spreading infection up lymph vessels and veins, with areas of black i.e. dead skin. I would guess half those babies die, so this isn’t a bacteria to muck about with, especially when in close proximity to one's genitals. The black spot was also very painful in a way most boils are not. At the time, we discussed with consultant who suggested pseudomonas on basis of black spot, so I knew this was a possibility, and the Tazocin is an appropriate antibiotic. Pseudomonas are clever bacteria - been around longer than we have, and have special ‘efflux pumps’ that push out antibiotics making them highly resistant. They can create biofilms e.g. around Hickman lines, which are almost impossible to treat without removing the line. For some reason, they also grow better in zero gravity: they did an experiment in the space shuttle. Why they did that, and who funded it is a mystery. [Obviously I googled that, but I knew the rest, honest]. I seem to have developed a bit of “chemo brain fog”. Aside from my constant apathy and lack of energy, I’ve found I can’t play more complex pieces on the piano. I can’t seem to read the keys (flats and sharps) and make my fingers play the right notes. I suppose that reading music and playing is a fairly complex cognitive task, and I’m OK on the simple pieces. I’m not ashamed to admit that depressed me quite a bit, but it’s just another thing to work around and I will get better. Still, along with all the other changes, it makes me realise some of what others undergoing more intense chemo must contend with, and I feel so sorry for kids who have to endure all this crap. I was full of bravado when I was first admitted. I thought the first week of chemo would be horrible, the 2nd week would be a bit miserable, but by weeks 3 and 4 I would be up, bed made and ready for kit inspection by 8am, hour of exercise, work, emails, piano, lunch and repeat. The exercise bike was next to my bed for 3 weeks until they took it away. It had been constantly mocking me. You lazy, pyjama-wearing slob, you can’t even bare to look at me. Honestly, I don’t know what I do all day. Time seems to pass quite quickly doing nothing. A few of you wondered why I brought a tape measure in with me. I’ve measured my mid-arm, mid-thigh and abdomen weekly (once a growth and nutrition expert, always a growth expert etc.) The results are in and rather surprising. When I was first told back in April I would need my HSCT in October I asked what I needed to do, and my consultant told me I need to put on some weight. That was deeply irritating given I’d spent lockdown exercising to get down from my porky 74kg to a trimmer 72kg. Most transplant recipients lose <10% body weight, so I ate every pastry going even when I wasn’t hungry and weighed in as a Super Middleweight at 77kg. I’m now around 74kg but forcing myself to eat even when not hungry. My mid-arm circumference has only gone down by 0.5cm. Not much at all. But my mid-thigh has gone from 55cm to 50cm. You might think that is only 10%, but actually it’s more. Circumference is 2*Pi*r and volume is Pi*r2*height, and doing the math, that’s actually a 17% loss of muscle mass. You would also imagine my abdomen had shrunk, using those carefully accrued fat stores. I was 99cm – I had quite a belly – and now my mid-abdomen is…. 99cm. No change. My muscles (lean mass) have slowly atrophied releasing plenty of energy as the amino acids are converted into glucose and fat. That looks to have provided all the extra energy needed, and there's been no need to start burning the fat, although longer term that would happen. It also shows you why BMI, or weight alone, doesn't really tell you the important changes. Losing weight by eating cabbage soup and not exercising is not only pointless, but harmful. Loss of muscle mass results in higher levels of tiredness, muscle weakness and more trips and falls. This is why being bed bound as an older person is a real worry. On the plus side, there's plenty of spaces to launch the dart at for my heparin injection. I didn’t get any bloods checked today, but things are heading in the right direction and yesterday my Hb was up to 90, and neutrophils up to 0.33. Slowly slowly catchy monkey. Once again, thanks for all your comments and wishes, and support. It's good to hear from you even if I don't reply. That's all folks.
54 Comments
Tony
10/24/2021 01:52:48 pm
My Dad used to swear by lime and lemon fortisips with his gin, with or without tonic! Keep the chin up. You’re an inspiration.
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Shalabh Garg
10/29/2021 01:04:30 am
Keep it up Nick, quite inspirational and great to see you keeping your usual sense of humour. 👏👏
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Jelena Stojanovic
10/24/2021 02:07:05 pm
Keep going Nick. Thinking of you and sending you best wishes for a full recovery.I learnt so much from you in 12 months I spent on NICU,not only clinical but also how to educate juniors and how to lead in stressful clinical scenarios.Keep writing,we will keep reading and thinking of you. I don’t cycle,but will do it next Saturday for you.Photos to follow…
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Monica
10/24/2021 02:09:33 pm
Must prepare some Colombian pandeyucas for you sometime!! So glad to hear bloods getting better!! Sure you’ll get your clear brain back! You’re too clever for ‘brain fog’ to last!! Keep these inspiring post going 🙏🏼
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angela huertas
10/24/2021 07:49:01 pm
Interested in pandeyucas!
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Mario
10/24/2021 09:54:51 pm
I concur and maybe bocadillo con queso
Charles
10/24/2021 02:24:35 pm
Thanks Nick for this - you’re a legend, taking this beast by the horns AND sharing your journey with us - thanks. Wishing you all the best and a full and swift recovery. BEAT it! Fingers crossed and til soon. C
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Alex Mancini
10/24/2021 02:27:45 pm
Your blog certainly doesn’t appear to be affected by your ‘brain fog’ , which is raw and honest with your dark humour! Thank you for keeping us updated and know that there is a lot of love & strength out there for you. If you’re bored, I could give you a slot on one of my teaching sessions ……. We need to keep that brain from being fogged. Sending much love x
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Janette Proud
10/24/2021 02:29:12 pm
You are doing so well and your right about what kids go through I was on ward 4 again today ,they are incredible .
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Donna
10/25/2021 08:07:01 am
You are an inspiration Nick, you've got this.
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Sarah Voysey
10/24/2021 02:58:21 pm
This is my favourite entry so far. Perhaps because selfishly it’s the one I learnt the most from, but also because I felt it was the rawest so far. Tough journey and sounds like a hard part but you do have a tonne of support which I hope goes some way to boost your positivity even during the darkest of nights. Actually I used to quite like the nights when I was in hospital with Oliver. There was comfort in the quiet, perhaps because generally no results come back and there are no unexpected interruptions of ward rounds or bloods or samples to be taken. I quite liked knowing that it was just the time for healing. I used to watch Oliver and imagine his little body healing with every breath. I hope yours is doing the same. Re the heparin injections the best advice I have is to NOT run the area after you’ve injected (it causes a bigger bruise...but I guess you know that already). Looking forward to the next blog instalment already. Much love, the Voyseys
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Sarah voysey
10/24/2021 03:03:07 pm
Typo RUB not run
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Gillian
10/24/2021 05:45:03 pm
Rice pudding comes in packets! Ye Gods and little fishes - whatever next. Direct quote from my late mum there. Oh yes, and seems the reason why Anthony Nolan jettisoned me from their Christmas card list is I’m too old. I just checked. Way too old apparently. Damn!! In fact too old to donate anything now except a bit of blood, unless I die first in which case it’s all up for grabs. Least I can do! Technically I could relactate too I suppose. By the way, DHM good for mouth ulcers I’ve been told. No evidence base - naturally 😂. Can always lay my hands on some if needed - am still well connected in that sphere! Just say the word!! Your blog has kept me from the Land of Nod and I suspect from sleeping easy tonight. Neither of which is of consequence or do I mind at all because I’d trade far more to see you well and entertaining and educating us all in equal measure. At a conference podium I mean rather than through your very excellent and inspiring blog. The latter will have to do for now, although it’s a bit low on the infant nutrition content - so if you can squeeze a bit in there please (challenge) …. but am looking forward to seeing you before too long. Off now to check if I can find anything to support the mouth ulcer theory. Take good care Nick or rather be taken good care of. Oh yes and are those heretical packet rice puddings edible? Hope so. X
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Kate Hudson
10/24/2021 06:22:35 pm
I learned something new about Nick - you’re an accomplished pianist. How I never knew this is another matter.
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angela huertas
10/24/2021 08:17:37 pm
Hi Nick, once in nutrition always in nutrition- Tape Measure comes in handy! 99cm and no change? I would have thought it was the first measurement to go down. Head circumference also down as well as there’s no hair? Must not be confused with reduced cognition! despite the fogging.
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Nick you remain amazing ! Be kind to yourself emotionally and physically you’ve been through and still are going through so much just take it easy!!! The Les Dawson piano playing will get better! You think of chemo of affecting you physically but no one ever says about mental challenges and fog, that must be horrendous. Stay positive and rest! Thinking of you . Bit of a bugger not being able to drink tea though x
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Helen
10/25/2021 12:55:51 am
Weed? That's right - blame it on the nurses 😜
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Clare
10/25/2021 08:11:40 am
That foggy brain will become a sunny crystal clear brain again- especially with your musical skills to find the old pathways and hopefully create new ones too. You’re doing amazingly well despite everything. It’s really important for us to read this blog to help us understand what you’re going through as much you realising what some of your patients experience too. So thank you. Keep thinking sunshine rather than fog- ☀️🌫😶🌫️ Lots of love Xxx
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Paula Abramson
10/25/2021 11:20:13 am
Nick you continue to amaze me with your honesty and transparency. Thank you so much, sending you love and lots of positive thoughts xx
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Michelle
10/25/2021 01:33:08 pm
The irony of needing heparin signifying improvement! Brain fog must be so frustrating for you. I suspect even a simple tune on the keyboard is greater than a lot can accomplish so keep at it, hopefully muscle memory will kick in.
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Tomit
10/25/2021 11:29:37 pm
You lucky person you now looking like me ;) but I can only dream of being less than 78kg!!!
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Chris Embleton
10/26/2021 09:45:59 am
At least you said younger brother and not the good looking older one :-) xx
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Stefan
10/27/2021 01:46:14 am
Pseudomonas... so good you are not in zero gravity (but why did someone test culture pseudomonas in space anyway!) Glad to hear about the blood counts! Best wishes from Stockholm!
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Sri
10/27/2021 08:57:44 am
Nick - no one can beat you!!!
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