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!