Saturday, 15 August 2009

Second-guessing the medics – updated

1990 - I’m having an ultrasound on my right eye at Moorfields. I am anxious, but not overly so because the symptoms I’ve been experiencing are the same as those I had seven years ago and I’m expecting ultimately to be told the problem will go away and to get used to the weird green patch in my field of vision because they can’t do anything for me. The ultrasound operator is very talkative and we chat happily for a few minutes while she strokes my eyelid this way and that with the probe. And then she goes silent. I subliminally register the change, but shrug it off. I know she’s seen something because, in the course of the angiogram I had a couple of weeks earlier, the doctor called out to a colleague to ‘come and see this lesion!’ It turns out I have a retinal melanoma.

1999 - I’m having a mammogram arranged by the consultant I saw the previous evening. I’ve never had a mammogram before and it’s agony because I have small breasts and they don’t fit between the plates. The technician struggles with my body, gets her hand squashed, one of my breasts even pops out of the machine halfway through a picture being taken. It is a thoroughly humiliating – and excruciating – experience. Then it’s over and I’m asked to sit on a chair and wait. I sit there, breathless, holding my injured chest, angry that I have to be put through this torture when the consultant more or less said it was some benign problem. The technician comes out of the other room and says she should be having her lunch break now and has to go and fetch her colleague. She comes back with someone else who, when she’s seen the pictures, says that some of them are not clear because the other technician is fairly new and didn’t operate the machine correctly. I get a bit distressed, and even angrier, but do not think there is anything sinister. The experts at the Marsden deliver their verdict the next day: cancer in both breasts – except they were wrong.

2009 – A few weeks ago, I’m lying perfectly still in an MRI room (there is something incongruous in having such a sophisticated test in the basement of an 18th-century house in Harley Street, but I can’t see the humour of it at this point); my head is squashed between two chunks of foam and the machine is making a deafening sound. Still, I’m OK: I’m not in a tube and not feeling claustrophobic – much. The technician told me before the scan started that it would take approximately 15 minutes, but I’ve already heard her say, ‘the next one is eight minutes’, then, ‘the next one is four minutes’ several times and I know it’s taking a lot longer than it should. And then it dawns on me that they are not looking for damage to my cervical vertebrae, but for a tumour on my spinal cord. When it’s over – 45 minutes later – and I query the time it took, she says, ‘We took some extra shots because you’ve had a melanoma,’ and I know I guessed right. Results: no tumour or nerve compression.

The moral of the story? You can’t rely on your instinct when it comes to such tests – just as well sometimes.

Where we at, then? (You can tell I’ve been watching The Wire, can’t you?) Well, no one knows why I’m having the symptoms that have been bothering me, but they’ve discovered I have osteoporosis in my spine (the MRI didn’t show that, by the way), which may or may not be responsible. Some big frightening words have been mentioned, but they don’t bear thinking – or talking – about right now so it’s a question of waiting and seeing if some calcium will do the trick.

Update (18/10/09): So, after waiting over two hours at the hospital and being weighed in public (ugh!), I was told (thanks to a clever computer program that any GP could probably master and thus save everyone a lot of time) that I wasn’t suffering from osteoporosis after all. That is, I do have osteoporosis, but no more than any other woman of my age and I don't require any specific treatment. Just need to be careful not to fall over too often.

That was the good news; the bad news is that osteoporosis is obviously not the cause of my symptoms… I wish it were.


  1. So I suppose you've just got to try and get on with your life as best you can in the meantime.
    Life would be rather dull if we didn't have all those challenges to face - perhaps dull isn't such a bad thing.

  2. I sincerely hope 2018 passes without any further medical mix-ups or mysteries.

    If you must have calcium - ask them to give you Calceos.
    I've found it to be the most palatable supplement available.
    If they suggest Alendronate - do some research first. I decided not to take it but to concentrate on weight-bearing exercise and calcium. Mind you - I'm not osteoporotic yet - merely osteopoenic :-)

  3. Oh - and I meant to say I can empathise with the t*ts through the wringer stuff. One radiographer left me bruised for days!

  4. I'm still keeping my fingers crossed for you! And keep watching The Wire - there isn't a bad episode or season.

  5. Hey Bela!

    I've missed you on MUA but I do enjoy reading your blog. You and I are so alike in many ways.

  6. Yes, Sharon, that’s what I’m trying to do. But I can think of a myriad other things that would prevent my life from being dull. I’ve had enough such challenges already.

    Thank you very much for all the good advice, Trina. I know about alendronic acid (it can increase the risk of osteonecrosis of the jaw in people whose teeth are not in good nick – which is my case) so I have no intention of taking it or any other biphosphonates if I can avoid it. All I need now is for my jaw bone to die….

    If men had to have a similarly sensitive part of their anatomy squashed in that way, they would have found another way of testing pretty quickly, I think. Basically, I had a double mastectomy because I couldn’t face another mammogram (let alone masses of others as was suggested at first). I’m sorry you had a bad experience too.

    The Wire is THE most wonderful thing on telly at the moment. It’s coming to an end, though (we saw the last episode of the fourth series last night). I’m gonna have withdrawal symptoms when it’s over. I miss those people already.

    *hugging you back*

    Thanks, Anonymous. (I have a policy of not posting anonymous comments, but I decided to make an exception for your nice one. Next time, please give your name.)

  7. I hope I sense some slight bit of hope-not just resignation to a bad fate. I'm glad you are ok for the time being!

    The website where you used to post just is not the same without you. No spirited , insightful posts. It sucks!


  8. Ah, Carole, I have a feeling I'm not resigned enough, in fact. It would life easier if I were.

    You're too kind - as always. :-)

  9. Bela, I'm a long time lurker here. If it hasn't occurred to anyone yet (absurd, but it took nearly fifty years for my diagnosis) it might be worth getting a check for a malabsorption disorder. You don't say what your symptoms are, but these things are often overlooked.

    In my case, some very scary words were mentioned, along with, 'Oh, we'll have to test for coeliac disease too, but it won't be that.'

    Osteoporosis is one symptom of coeliac disease, among many.

    Sorry if this is way off the mark! I do hope it all sorts itself out. The uncertainty is worse than the symptoms sometimes.

  10. I have to chime in here on the calcium thing, since my sister is an expert in these matters - make sure it's a bio-available form, not carbonate, and liquid or liqui-caps if available. Also, it should be a calcium & magnesium complex for best results. Coral calcium is excellent.

    Another thing that might help is topical bio-identical progesterone cream - it's plant-derived and totally safe, unlike some of the prescription-only hormones that are chemically synthesized and NOT a good idea. I have personal experience with this!

    Please don't take those horrible bone drugs - it's not just the jaw bone, it's the thigh bone too - sudden catastrophic breaks are happening, with no warning, the whole thing just shears off. The problem is, they kill off the cells that make new bone and keep old bone in place, so you basically become a petrified forest. Bone is living tissue and loss CAN be reversed - if you want to know more I can hook you up with some good resources.

  11. LindaM, please forgive me for not answering your comment earlier: I was busy working when I wasn’t worrying, and worrying when I wasn’t working. Everything else went out the window, I’m afraid.

    I've had IBS for 15 years now and I cut dairy and gluten out of my diet long ago – as well as most other things, in fact. There is no doubt that I’m not getting all the nutrients a body requires, but there’s nothing much I can do about that apart from taking supplements (the ones I can digest, that is). It also means there is little chance it’s coeliac disease since I’m not eating wheat, etc. But thank you for the suggestion.

    For the moment, I’m quite happy with the uncertainty.

    Flora, thank you very much for all your advice. I have finally obtained an appointment at the osteoporosis clinic on Tuesday morning and I will take your info with me.

    I’m not sure how progesterone cream (real or otherwise) would help in my case. Lack of hormones is the cause of most of my problems, but probably not what I’m experiencing now.

    I have already decided to refuse to take any bone drugs. They’re gonna love me at the hospital! LOL!

    After my hospital visit I might like to ask your or your sister’s opinion on what the doctor said or prescribed; would you let me have your email address (no one will see it – I won’t publish the comment that contains it) so I can write to you in private? I’d be very grateful if you would.

  12. I haven't been paying visits regularly and just read this post. I hope all is well or at least better. Good thoughts for an uneventful new year.

  13. Thank you very much, J! :-)


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