Cutting it fine

OK, so Virgil has crashed and burned as an oncologist in my opinion. Why? Firstly there is the suggestion that he sees me only 4 times a year. Hmmm. For someone with secondary cancer, pleural effusion and a tendency to be unstable on chemotherapy, this seems an extremely bad idea. We have maybe a total of 20 minutes talking together yet he thinks this is enough to know me and my cancer. It’s not as though cancer follows one path (and, pardon me, but my cancer is the rare and aggressive Inflammatory Breast Cancer. You don’t see many of us around). Everyone is different and since the reocurrence, my condition has been complicated. So I say my bit about usually being seen every 3 weeks and he agrees to this. Except he doesn’t really. A week before I would be due to see him, I ring his secretary to say I have not had an appointment. That’s because none has been made. OK, this could be an admin error but he should be looking out for things like this. I know my previous oncologist would have. The first appointment I can have is on 12th June, a month since our last meeting. Since then there have been an echocardiogram, blood tests, including tumour markers, and a CT scan. Have I had a since result from any of these? No, of course not. I asked for the result of my echo at the time but was told it is not policy to tell patients “as they might not understand”. Surely if you ask for the ejection fraction it shows a least a smattering of knowledge? I phone my GP to see if he has the results. No. If the ejection fraction is too low, I will not be able to have chemotherapy on Tuesday. I phone Virgil’s secretary. Not only is it the usual “we don’t give results over the phone” (which I accept and would like to point out that she has been very helpful so far) but Virgil hasn’t even looked at the results so there is no report to send to my GP. Cutting it close, Virgil, cutting it close. So of course, there are no blood test results, no tumour marker results and no CT scan results.

For anyone who has to have regular tests, the waiting around afterwards for the results can be excrutiating. It highlights here the dissonance between Virgil and I and his apparent lack of understanding of what it is like to be a patient. Especially a patient with a terminal illness who is really, really keen on keeping everything on track so she can hang on as long as possible. It makes me very angry and upset. Yes, he’s probably studied hard somewhere and it may have been a struggle but what use is that without a rapport with your patient? The patient/doctor relationship is so important and perhaps what’s worse than his lack of empathy with me is that I don’t have any faith in him. I don’t have any faith that he would go all out to find a new treatment, research options or really look after me. I feel like something on a conveyor belt, being churned out and if I’m not the same as the person before or after then that’s my hard luck. For God’s sake, this is my life we are talking about, not a minor illness. Having optimism, faith and a positive outlook is crucial in making my time as good as it can be. It’s all about quality of life.With a lot of pain, fatigue and just the reality that secondary cancer brings, it’s normal for me to be beating off depression or just general low mood. I feel I’ve done my bit with changing work and moving home. What I really need is a specialist I can rely on, who can understand this and see me as a complicated but interesting puzzle which he or she wants to solve or at least outwit the dreaded disease for as long as possible. I just don’t have that feeling with Virgil.

So, the second opinion is on the horizon and I am really hoping this doctor will have a better attitude. If it seems he is constrained by his Health Authority (which may also be a reason for Virgil’s apparent failures), then I will be looking further afield. I have my sights set on Addenbrooke’s or Sheffield and I’d be really happy to hear any recommendations from anyone who is/has been treated at either hospital.

3 thoughts on “Cutting it fine

  1. Hey my lovely, brave, courageous friend,
    you tell em, you are not another set of notes they can’t be bothered to read, you are the most extrordinary, unique, intelligent, hillarious, understanding, patient, loving, caring person i have ever had the pleasure of knowing! Friend, Mother, Wife, Counceller, comic, inspiration, listener.
    You will be heard, you should be given the best, you must not go quietly and if it all falls on deaf ears, you must find someone who will listen!
    I can hear your anger and frustration, and I hope it carries your needs to where you’LL get satisfaction! LOVE YOU SHELLEY as I know so many do.
    Let me know if there’s anything i can do? H xxx

    • Gulp! That’s brought a few tears to the old eyes. Thank you for your lovely words. Yes, I will find someone better but it’s good to know I have so much support out there. Love you, too xxx

  2. Shelly I completely understand where your coming from, I saw the same with my sister…sadly missed and feel the same with my onc, she has just had a baby and saw her replacement a guy who literally said ‘Do you feel ok ?’ I sad ‘Yes ok’, He said See you in a Year !!!! That was in January, Feel so tired (have reduced working to 2 days a week) Very bad pain in back where I have ‘deteriation’ but don’t want to go back as feel, Well like it’s not my place to bother them !!! Decided I will get the Summer out of the way then go back all guns blazing. Partly because I can’t stand more depressing news, partly because I feel ‘What’s the point ‘ They just make you feel like your ‘Bothering’ them.
    So moan over, good luck Shelly… Go fight your corner girl, Hugs to You XXX

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