Strange times

After a few celebratory posts about living, I need to return to the sleep apnoea saga… I know some of you are avidly awaiting the next instalment. However, first, I want to share something strange…

Having returned my jet pack-styled monitoring equipment to the sleep clinic, I only had to wait a couple of weeks before receiving a letter from them, calling me back in. The speed of service at this new centre is impressive, but I feel like they’ve maybe lost some patient care along the way.

The letter was cool and clinical, telling me I would ”be seen by a member of the Lung Function and Sleep Services team” for a trial of CPAP [Continuous Positive Airways Pressure] and to “Please note: You will not be seeing a doctor when attending for this investigation.” I was asked to read the attached leaflet:

Sleep apnoea001 Sleep apnoea002

I was surprisingly upset by the business-like tone of the letter. Even though I’d anticipated a positive diagnosis and knew what the treatment would be, it was still a shock to be called in so coolly and without being able to see a doctor to discuss the matter. I felt like I was one on a long, albeit fast-moving, conveyor belt assembly line of patients being tested and fitted with machines, without any individual care.

There was no acknowledgement that being diagnosed with sleep apnoea and needing to be fitted for a CPAP machine, to use for the rest of my life, might be anything less than business as usual. Compared to this, taking Penicillin and Aciclovir daily for the rest of my life is child’s play!

I know they have to use standardised mail merge letters and they can’t write personalised letters to individual patients, but surely the standard letter could be more sensitive to everybody!?

I needed to rearrange the appointment they’d given me. When I called, I mentioned the insensitivity of the letter and the fact that I had not had a chance to talk through the issues of being diagnosed. The receptionist I spoke to was most unsympathetic to my complaint and assured me that they DO care about their patients. I baulked at this statement… Surely the measure of patients feeling cared about has to be taken by the patients, not the staff?! I asserted that I was a patient and that I didn’t feel cared about by the tone of their letter, nor by the reception I was getting to my feedback. I didn’t add “so stuff that in your arrogant little pipe and smoke it, lady!” But I wanted to.

In fact, at one point in the conversation, I said that I would prefer to be treated for another blood cancer than to have to deal with their clinic. At least in Haematology, all the staff treat patients with sensitivity and respect. I felt a bit guilty after I’d said it, but even now, I can’t deny the truth of the statement, or the strength of my feelings about it. How bad is that?

(Just to be clear, because one of the comments I received about this made me realise that it might be confusing, I didn’t feel guilty about my outrage or venting my anger at the receptionist, but for wishing ‘another blood cancer’ on myself.)

I was all ready to write this up and post it, with no apologies and still believing I was entirely in the right, when I re-read what I’ve written here, then I re-read the letter and the leaflet and I can see quite clearly that there is something a bit strange, a bit over-the-top, about the way I responded to this situation.

It’s difficult to comprehend, even for myself, why I should react so crazily to such a minor issue, after everything else I’ve gone through. But now I’m wondering if maybe this out-of-proportion reaction might be a long-delayed anger response to the initial myeloma diagnosis that I never expressed, was never even aware of?

I was prompted in this thought by another blogging friend of mine, Shelley, who has inflammatory breast cancer, diagnosed in March 2012. She recently wrote this in her blog: “When I was diagnosed with cancer, I didn’t feel angry at all. I felt shocked, frightened, bewildered and many other things but I didn’t feel angry…  I just accepted that I had cancer… and got on with things. But this week, I have found myself getting angry… I feel angry because this will not change. This is how it is. Forever.

I can fully relate to those initial feelings of shock, fear, bewilderment, etc… and to the lack of anger. Could I be having a similar experience to hers now?

I hope you don’t mind me borrowing your blog post title, Shelley? Thanks!