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!

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
This entry was posted in * Myeloma, Emotional health, Sleep apnoea and tagged , , , , , , , . Bookmark the permalink.

13 Responses to Strange times

  1. Delayed anger can be bewildering but very real. Good you are acknowledging it. However the letter WAS pretty clinical. Also because of mild dyslexia I kept reading CPAP as CRAP which reinforced my sympathy for your complaint!!

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  2. Caroleann McCallion-Davies says:

    Everything that Meg said, including the CRAP bit! I empathise with the feeling that we are on a conveyor belt. My health conditions are nowhere near as serious as yours and I feel that too. We want to be CARED for, we want to feel that it’s understood we are frightened, shocked at what our lives have become. We gather all our guts together for examinations, diagnosis, discussions of treatment. We want to get through all that with dignity and no breakdowns. Then later our emotions kick in. Any Receptionist dealing with patient appointments SHOULD be aware that they are speaking to human beings, people who are receiving treatment for serious health issues. The need for a sympathetic approach should be a part of their training. My dealings with making & changing various appointments left me wondering if I was speaking to a Call Centre. A room full of people taking calls & making appointments for all manner of things. All ticketty ticked into a computer. Something else ‘Outsourced’ from the NHS. So I mentioned it to my Doctors Receptionist and apparently this IS the case (in my area anyway). No matter what the number you dial, you get put through to one place that deals with all appointments.

    But whether she was directly employed by the NHS and speaking from that clinic, or by a company employed just to take calls & input to a computer system – she has probably heard worse than what you said to her. From my experience of Call Centre work, you do become a bit robotic, just give the ‘approved responses’ and get the call done with. My bet is that she would shrug it off and go on to the next call in the queue. So there’s no need to feel any guilt for saying what you did. Especially since it was the truth!

    I guess it’s all a consequence of an underfunded NHS with a huge number of patients using it. It IS a conveyor belt. It becomes impersonal and leaves us feeling less ‘cared for’ and more ‘dealt with’.

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    • Jet Black says:

      Well, thank goodness I don’t have to deal with a call centre around my healthcare. I fully empathise as they do my head in for anything else I need to call about, except for Apple and First Direct. Not advertising here, but I have always found both these companies’ phone staff excellent, almost like chatting to a friend, or someone who might become a friend if you only had more time to chat.

      To be clear though, I didn’t feel guilty for venting my frustration. The slight guilt I felt was for suggesting I might want another blood cancer.

      And the thing that bugs me most is that it’s not about the NHS being underfunded (although the NHS IS underfunded, deliberately!), but like you say, it being farmed out to private companies… and there’s the key word – companies are about making a profit, efficiently. They are not about patient care, no matter what their credo says: http://www.circlepartnership.co.uk/about-circle/our-credo. I will be writing more on this soon.

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  3. Julie Zimmer says:

    insightful, interesting perspective – reminds me of a saying, I think Kahlil Gibran – “Around what grain of sand was your pearl formed?” – we may never know what grains of sand or daily incidents are behind the reactions/behavior of even our friends and ourselves, let alone strangers with whom we interact.

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    • Jet Black says:

      Oooh, thanks Julie for that lovely quote. I shall make a note of it… You never know, you may see it reappear in a blog post at some point. I will credit you for sharing it with me. Thanks!

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  4. I look forward to reading more about your feelings of anger Jet if you do locate them!

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    • Jet Black says:

      Haha! Wendy! No problem locating them, as I’m sure you know, but attributing them to a cause… well, there’s definitely at least one more blog entry in there.

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  5. Jayne Hewison says:

    I understand completely. I also just accepted my Multiple Myeloma diagnosis and got on with months of chemo and steroids, losing my career in the process, having to adjust to being ill all the time, feeling like I’m in a time warp……then suddenly, out of the blue I erupted at several people over a couple of days…..unfairly…..they were just trying to help…..and I came to a similar realisation…delayed anger.
    Well….tired of being told to hang in there…..this new life sucks at times…..but at least it is still life, is it not?

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    • Jet Black says:

      It can be very hard, Jayne, but yes, we are alive! And as long as we recognise it and do our best to make it right with the people we ‘erupt’ at, I think expression of emotions is part of being alive and to be encouraged… especially with supercilious desk clerks.

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  6. Jayne Snell says:

    Wow. I think there must be something in the air. I wrote a blog just yesterday. I to have coped with having a bone marrow stem cell transplant in a very positive way but now I have issues with my hips and last week I sort of had a melt down about how I am now. I accepted my diagnosis, never thought why me….but now I would like to say enough is enough and give me a break! It’s interesting what tips us over the edge. I spoke to my consultant yesterday about my recent emotional self and guess what I am/WE are normal. She did say that post transplant patients can go through a sort of bereavement stage. …For the person they were. And as she also said this is a marathon and test of endurance, unfortunately I’ve always been crap at long distance. I guess it’s time to change that.

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    • Jet Black says:

      Yes, I’m much more of a short haul person too, Jayne. But like you say, we need to adapt and we do and we will.

      I agree with your consultant saying we go through bereavement-like feelings. I remember my consultants saying how I was feeling was perfectly ‘normal’ for what I’d been through, they’d seen it before and they knew I would come out of it. We all grieve something with this sort of illness and treatment and with that grief comes anger, fear, anxiety, frustration, sadness… I guess they have to come out somewhere.

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  7. Pingback: The continuing story of something completely different… (or more adventures at the sleep clinic) | jet black living…

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