One year on…

Sunday 8th March 2020

Only I would have a heart…not an attack but something grim that has not yet been officially named…on International Women’s Day. Go me! Seriously body, we could have celebrated some other way…maybe lunch?!

Anyway, one thing that really struck me in the weeks and months leading up to 8th March 2019 was how many compliments I received from other women (not men) because I had reached my lowest weight of adulthood. Not through choice. Not through diet. Not through exercise. Nothing in my life had changed. I was still doing my best to eat my five a day and moderate the more pleasurable stuff. Plus, I was running and playing netball, several times a week, as I had done for many years.

“Wow Sue! You look soooo slim.”

“Skinny Minnie! You look really great!”

If by “great” you mean…dodgy heart, dodgy bladder, probably a dodgy thyroid (as I’m now discovering), kidney stones, topped off with anemia and an almost positive diagnosis of sarcoidosis – a rare, debilitating disease for which there is no cure – then YES, I looked completely and utterly fabulous!

The worst thing is I thought I looked pretty incredible too.

However, I’ve learnt over the past year that when my weight tips under a certain number on the scale it’s not usually something to be proud of. It often indicates there is evil at work. My body is fighting illness. I need to rest. Eat a bit more.

I guess what I’m trying to say…and what better way to do it than on International Women’s Day… is: Women, please stop judging others, and more importantly yourself, by the way they/you look. It doesn’t always indicate good health.

I’ve been skinny through worry, by eating ridiculous, tasteless meals on faddy diet sheets, from over-exercising, by saving all my “allowed” calories for boozy nights out…I mean seriously?!? What is wrong with us? Food for thought I hope.

So, Happy International Women’s Day to you and Happy One Year On to me! This woman – fat, thin or anywhere in between – ain’t going down without a fight! My body is pretty bloody brilliant given the shit it has had to put up with.

PS I’m off the morphine and have got an urgent cystoscopy appointment on Tuesday. I look forward to the day I don’t feel anxious if there is not a loo or an abundant supply of water nearby.

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Not a ‘heart attack’

Wednesday 4th March 2020

It’s been a while…part of that has been due to work, illness, general life admin…and also because I’ve been awaiting some fairly unsettling test results.

Outwardly, things have seemed great…I’ve been busy going to parties – fancy dress, Burns Night, I’ve carried on running four or five times a week, I’ve travelled back to the motherland to visit much loved family and friends, I’ve changed my hair colour…AGAIN…but everything has come to a head and my life is now on hold…

Where to start?! Well, I haven’t yet got the “definitive answer” I was hoping for. To bring you up to speed: Since Christmas, a PET scan – which tests for inflammation – revealed there is no active sarcoidosis in my body. This means the specialists can’t prove from that scan that I’ve ever had it! *eyes roll*

However, it did reveal that I have so-called “lesions” throughout my skeleton, in my salivary glands and on my spleen. A recent CT scan has also shown I still have granulomas – clusters of tissue that are usually formed during a period of inflammation – in my right lung. I’m told this and the lesions are symptomatic but not typical of sarcoidosis. I now await a lung biopsy – which involves sticking a camera in and collecting some tissue – to find out exactly what it is, once and for all. If it’s not sarcoidosis it could be cancer or tuberculosis, but that’s much less likely and a cancer test to check whether the lesions in my bones were malignant has already come back negative.

If it turns out to be sarcoidosis the great news is it’s inactive and, therefore, would be classed as being in remission. As the very first CT scan on my lungs last year showed both were affected by granulomas and not just one, as is the case now, I feel hopeful that this is indeed the case. If that turns out to be true I won’t be given any treatment – typically yucky steroids, my consultant has reassured me. This is because my lungs and heart are actually currently functioning completely normally. In fact, excitingly, this has also led to the words “heart attack” being removed from my records. Something happened to it last March – the troponin levels were raised and part of the muscle wasn’t inflating properly – but as it’s recovered it ultimately can’t be termed as a heart attack. Yet, they still can’t tell me what actually caused it. There might not even be a term for it?! Talk about limbo! The biopsy should help to shed some light though as “everything is clearly related”, I’ve been informed.

This is likely to be the case for my ongoing UTI problems too, which incidentally are causing me far more problems than anything else at the moment. I’m stuck in a hellish cycle. I can’t drink so much as a glass of wine or have sex, or it sets it off. And I’m drinking at least a pint of water an hour…the lesions on my salivary glands don’t help as my mouth is constantly dry…but I shouldn’t expect this is good and is storing up trouble for the future.

As you know, last year I was put on long-term low dose antibiotics which didn’t work. I asked for a referral to a new urologist who is now arranging diagnostics in the form of a cystoscopy…though this isn’t happening as quickly as I’d hoped so I’m trying to be diagnosed privately. If nothing untoward is found in the urethra or bladder I’ll be sent to Bristol to have my kidney stones blasted. In the meantime, no-one wants to give me antibiotics due to concerns about me becoming immune to them. This is all very well but more often than not when I feel a UTI coming on a urine sample doesn’t indicate infection and by the time it’s picked up I am in so much pain and discomfort…and typically during out-of-hours periods…that doctors are either being called out to my home or I’m seen in A&E. Not at all how the system should work! The NHS is under enough strain. Hopefully, I’ve been told how to work the system better but for now I’m off work feeling somewhat dreadful and drugged up on yet more antibiotics and morphine. Hideous!

So, I’m doing what any film lover should – when I’m not snoozing on the sofa – watching ridiculously long, classic movies. Starting with The Ten Commandments!

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Mimic

Christmas Eve 2019:

It’s almost time for the Big Man to arrive…there’s a cake left to marzipan and ice, shopping to be done, presents to wrap, cards to hang…what there is absolutely no time whatsoever for is illness. So you can imagine my utter delight when I dialled 111 on my way home from my last shift before Christmas on Thursday – expecting they’d advise me to go to my GP the next day – and I was informed I had to pull over, as a matter of urgency, as there was an ambulance on its way.

Yet again I found myself in an A&E department with a nurse desperately fishing around for a vein. My car abandoned in a pub car park.

After a swift blood test I was told my heart was perfectly fit and fine but there was a blood clot on my lung.

Cue: uncontrollable bawling! Maybe I’d been overdoing it, going to too many Christmas parties – including the 80s one with my good friends Amy and Cat, stressing about all the festive stuff there was left to do…

It’s alright though because like a true Brit after a nice cup of tea and a couple of slices of toast I’d absorbed the news.

I had literally felt fine…really good actually. Well, apart from the fact that for nine hours before I made the phone call I’d experienced excruciating pain in my left breast and shoulder blade – shooting pains that made me wince every time I breathed in. I’d tried shallow breathing and ignoring it. It’s probably indigestion I thought…(I think we’ve been here before!)

Luckily, my colleague Dave convinced me I needed to get checked. Why do I still have such an aversion to getting checked? Note to self: you are not invincible, Sue!

Anyway, after being told I had a clot, once again I felt that overwhelming disgust for my own body. How the hell could it do this to me? Again! But I was tired, it was 03:00am. I’m over reacting, I thought.

Turns out we all were because a CT scan found no clot.

Instead the levels of an enzyme in my blood that detect clots were raised, but this happened because of my lung disease, sarcoidosis. Apparently.

The only thing that is really clear is that no-one really knows much about this auto-immune inflammation that is having a right bloody good go at me.

After some emergency anti-coagulant drugs – I didn’t need – a couple of hospital meals that were actually pretty decent and 24 hours of listening to the confused old lady in the bed opposite, asking repeatedly why she couldn’t go home and if someone would turn the telly up, I was discharged and finally made it to Center Parcs for the surprise holiday we had planned for the kids, albeit a day late. They’ve had a blast!

I’ve been referred back to the Royal Brompton in London where I’m due to get all my sarcoidosis results in January…though I’m starting to get the feeling they won’t answer all my questions. Having a rare disease sucks but at least there was no clot. Small mercies.

Right then. Let’s get on with it! Merry Christmas to you, have a magical time and I’ll speak to you on the other side…let’s all try to avoid any drama and stay out of hospital!

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PET scan prep

Thursday 7th November 2019:

I’ve got a last minute PET scan (positron-emission tomography) and cardiac echo at London’s Royal Brompton tomorrow.

The PET is apparently perfect for discovering exactly where in the body sarcoidosis is lurking.

The downside is in preparation I haven’t been able to eat any carbohydrates at all today, or it’ll render the tests useless. And as if eating just meat, eggs and fat wasn’t torture enough (my colleagues have certainly been wary about sitting too close) nothing other than water is allowed to pass my salivating lips for the 18-hours prior to the tests on Friday afternoon, which will probably be the precise moment I go past the point of feeling hungry.

However, as I said to the receptionist who booked my appointment: “At least I’ll start the weekend feeling thin!”

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‘Definitive answers’…

Thursday 10th October 2019 (continued):

…are apparently what I’m going to get!

London was London…someone almost lost a limb on the Tube because he couldn’t wait just two minutes for the next train. However, my first cardiac sarcoidosis appointment was fairly short and sweet but seemingly successful.

The cardiologist took down notes as I rattled on about all my recent significant illnesses (his pen actually ran out halfway through) – my heart, ongoing UTIs, kidney stones, previous neurological shit – and he reckons there’s a good chance they’re all linked. BUT only PET scans, which detect inflammation, and probably further MRI and CT scans will absolutely nail it. And they will be looked at by sarcoidosis specialists who only deal with that one disease…day in, day out.

So, I should get a date in a couple of weeks for when I will have to go back for a whole day of tests and possibly an overnight stay…I’m sure my boss will be thrilled! Possibly even as much as I am at the prospect of a dried out, curled up hospital meal.

One thing the specialist did say was that my “heart attack” was unique…not like any other…and probably only got given that terminology as there is no other current medical term for it.

I’ll be in the bloody Lancet yet! Either that or some “crazy hairstyles of the decade” journal given three folk asked if they could photograph my mop today. Seriously, you’re in London. I live the sticks. You really ought to get out more!

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Cardiac sarcoidosis appointment

Thursday 10th October 2019:

I’m channelling my inner Wonder Woman again today as I’ve got a cardiac sarcoidosis appointment at London’s Royal Brompton Hospital. They’re like gold dust and I only got told about it last week so it’s either a cancellation or they’re concerned. I’m wearing matching underwear and my will is written so I guess I’m all good to check out…but only if I really have to, and frankly I’ve not tried nearly enough cake in my lifetime yet!

I jest but I have increasingly found myself short of breath these last few weeks. Again, there is the conundrum of whether it’s my lungs or my heart that’s at fault…or possibly neither. I am, as we know, slightly more prone to panic attacks these days. Need I remind you of my sports shop debacle not long after my heart attack? I won’t be lying down on any floors today to calm myself though as there’s not nearly enough time. I’m already on a train to the big smoke from Birmingham and afterwards I’m meeting my best mate Lucie back in Brum for dinner.

Life is busy but fun. I’m six weeks in to the temporary job on the sub editors’ desk. It’s flown and I love it…even if it has taken until now to get my staff pass to actually let me in. I’ve only worked for the BBC for a mere 20-odd years.

Anyway, right now I must try to live up to my new nickname “Super Paz”, as dubbed by my Brum colleagues. Though if I fail, as one of them (Jay) quickly pointed out: “We will just use it ironically.”

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I got the job!

Friday 9th August 2019:

On the five-month anniversary of the day I was told I had suffered a minor heart attack, I am happy to report I got the job!!!

I’m moving to Birmingham part-time for three months from September to work on the sub editors’ desk, with the colleagues who have possibly (most likely) been silently correcting my copy since I started this blog! You know who you are…

I’ll learn so much. It’s exciting…and just a little bit terrifying…but most of all it’s a challenge. You can either feel hard done by or you can just bloody well get on with it. To be honest ill health has brought far more positives than negatives so crack on life…bring it on.

My heart is normal and I’ve now been off all my cardiac medication for a couple of weeks. The cardiologist didn’t seem convinced it was the right move at first as I’m a bit of a special case but hey, I’ve not dropped dead so that’s surely hopeful.

My sprained ankle is healing well and so I’m back running almost every day which is frankly as good for the mind as it is for the heart and waistline.

I’ve been enjoying the hamster wheel of work, more days out, I’ve even been on holiday with the family to “posh Butlins” as someone put it…I still haven’t been able to bring myself to tackle the pain in the neck that is travel insurance so staycations it is…AND I completed the Crystal Maze for my best friend Lucie’s 40th in Manchester. A weekend of being very northern and retro. Perfect!

Oh, and I almost forgot…I sold the warts I’d helpfully developed on my hand to my Dad for a penny…he honestly asked for them…but that old wive’s tale was utter bunkham and I resorted to the over-the-counter ointment I should have used in the first place as they were banished in a few days.

It appears the only thing wrong with me…and I appreciate this is subjective…is the 12th damned UTI I have recently developed after the long course of low-dose antibiotics the urologist put me on, and felt confident would cure me, came to an end. Sigh!

I’ve got another appointment with him next week where he’s likely to suggest a camera might be the best way to see what’s going on. Gulp!

The good thing is, if he wants to blast the kidney stones he now can as I’m no longer at risk of bleeding to death because of the blood thinners. Silver linings and all that.

So anyway, I’m not quite sure what to do with myself now I have very few ailments to whinge about. Answers on a postcard…

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