Breathing easy

Queen victoria gardens

This is the garden at Queen Victoria hospital in East Grinstead where I spent all day today at appointments. It pretty much sums up my experience. And it’s the first time I’ve felt moved enough in a medical setting to take a picture of something beautiful. There may have been other beautiful things in other places but I’ve never felt relaxed long enough to notice, nor been sob-free long enough to focus.

Today was different.

For the first time I felt unequivocally  listened to, treated like a whole human person and put firmly at the centre of everything that will happen in the coming weeks. It was such a new feeling that I got over-excited until I remembered that this is how it should feel. This is how it should be.

My first appointment was with the health care assistant who within two minutes had jollily told me she had just been diagnosed with diabetes. We spent most of the time together comparing notes on our various diseases.

She weighed me. My ridiculously unscientific plan to gain more fat in my belly by eating as much cake as possible seems to have paid off. I’m one and a half kilos heavier. No guarantee it’s gone where it’s needed though. But the nurse did commend me on my efforts and reinforced the idea that maybe I was on the right track.

She measured my height. To test for MRSA she got me to stick very elongated cotton buds in my nostrils and down the sides of my thighs. Yes alright, in my groin. I’m not sure why I don’t like that word. It’s a perfectly good word. Perhaps because I link it with the word ‘strain’ and imagine some parallel universe where I attempt to do the splits and it goes predictably wrong.

The MRSA results will be back in two days but even if I have it, they still go ahead with the surgery. I’ll just have to apply some anti-MRSA bodywash before I go in. The hospital has never had MRSA in there but they’re totally up for putting their perfect record at risk to make sure I get into surgery.

Next up was my ECG to measure my heart. All was well as was my blood pressure, heart rate and all my answers to the medical questionnaire were acceptable.

Then I got a break for lunch and that’s where I found this wonderful garden outside the cafe. The coffee was even good and at the randomly awesome price of £1.48, who can say no. Cherry on top, the WiFi was free.

NHS coffee

Last appointment was with the anaesthetist. Up to this point I was thinking maybe the nurses were different. Nurses are generally easier going and I’ve had less problems with them than the consultants. And the anaesthetist was not a nurse. Maybe this bit of the appointment would be tricker.

Nope. She was as awesome, if not more than the nurses before her. She told me in extreme detail what was going to happen before, during and after surgery. She even told me about procedures they’d do that would be invisible to me because I’d be asleep. That I wouldn’t have known about. That maybe I’d end up with bruising from but wouldn’t know where it’d come from. She told me everything.

When I told her the anti-emetics I had in chemo hadn’t worked at all and maybe I’d have problems with the same ones they give me during surgery. She didn’t blink. She didn’t sigh or fob me off. She carefully explained the difference between what chemo does to the nausea centre of the brain and how the anaesthia works. She was attentive and genuinely interested in the story I told of how vaping cannabis solved my nausea in minutes. She got passionate when we discussed the neurology of nausea and pain and the fine line between poison as medicine.

We spent most of the appointment discussing cutting edge research and exploring approaches to cancer and surgery that values good mental health and the benefits of informed patients who are in control of their treatment. She only saw these as positive things. Never once did she get defensive. Never once did she hurry me along or make me feel I was a problem. That my knowledge and need for control were annoyances.

Sun sculpture

I can see why this hospital is a centre of excellence. They take care of the whole person. They are passionate about their field so that when their patients ask questions, they get excited. They want to share their knowledge, not hoard it. They want to learn and are open to patients bringing them new knowledge. They do individualised medicine as much as they can with the tools they have.

Now I’m feeling confident and happy about the surgery next week. This experience is so hard and they just made it that bit easier.

And I had my boobs professionally photographed. In a properly lit studio and everything. What a day.

19 thoughts on “Breathing easy

  1. Lisa

    Medical care as it should be: patient-centered, compassionate, empathetic, and intelligent. I’m so very glad that this is where you’ll have surgery. xoxo

  2. Ronnie

    I’m reading along and thinking of you Heidi, you are brave to be so open about everything and it must surely help other people too. Big hugs for today, and for next week xxx

  3. Heidi

    Yes Lisa, totally it should be all those things. I was beginning to think I was going a bit mad to expect it. But today they showed how easy it was to get it right. It’s all about the culture of each institution I guess. It’s beginning to make me wonder about perhaps there’s better places for the rest of my treatment. Thanks Ronnie, it does really help me to know lovely people are out there and coming along for the ride. Lots of love to you both. Xxxx

  4. Heidi

    It’s a huge relief that’s for sure. I wasn’t expecting it at all. Resigned myself to being a cog in the machine or meat on the conveyor belt. This made me feel like a person again. Thank goodness.

  5. Daphne Wysham

    Such a wonderful gift you are giving us as you go through this challenge: The gift of full empathy, and the desire to expect the same of our caregivers that you expect of yours. Well done. Here’s to perfectly symmetrical boobs, post-surgery!

  6. Letty

    Wishing you best of luck for a smooth surgery next week Heidi. So glad their are some evolved medical practitioners working with your care here. Must change everything to be able to trust these people and feel rightfully respected. Avidly keeping up with your blog. You are amazing. Loads of love Letty xxxx

  7. Paula

    Hi darling,

    You’re so inspiring. I am in awe at how you have managed to conquer a space for yourself where you feel comfortable in and in control of.

    As a side note, and as a direct comment on one your remarks, I also do not like the word “groin” for such a beautiful part of the female body. I am giving you the alternative to use the portuguese word “virilha” which has a lovely aesthetic and poetic twist to it (if you can manage the “lh” sound, though). (JK)

    Oh, and as side note number two, I seem to have missed the fact that you were vaping cannabis and that it helped with the nausea. I follow all your posts and remember discussing this possibility at some point, but somehow had not realized you were actually getting on with it. Fantastic, my friend, to acknowledge how you thoroughly research your options and make the best choices for yourself. Prejudice has kept many away from some relief, a fact I find revolting.

    To end this uncoordinated set of opinionated thoughts on your blog, I would like to highlight how I experience yours as a story of emancipation. I would love you for it if I hadn’t already unconditionally fallen in love with you all those years ago.

    I miss your heart-warming hugs, dear Heidi, and I hold your hand at all times,
    P

  8. Heidi

    Thanks amazing women for your beautiful words. What a lovely way to wake up. Daphne, yes full empathy. We need much more of that in the world generally and something I think we should all strive to excel at. It’s tough here with the NHS to do that because there’s a built in element of gratitude for any care you can access. Plus Britishness where we are allowed to complain but only under our breath or loudly when drunk. And yay for symmetrical boobs. I’ve already divorced mine so bring it.

    Letty, evolved practitioners! That’s it. I’m so relieved I found it. Much love back to you.

    Hah Paula, I love the new word for groin and will practice it from now on. Yes, vaping cannabis saved me in the last two cycles of chemo. I honestly don’t think I would have been able to do them without it. None of the antiemetics they gave me before that had worked very well. And all encompassing nausea was the worst and most challenging part of chemo for me. I hadn’t tried cannabis up til then because of my own prejudice and fear. Growing up in the ‘Just say no’ 80s programmed me to suffer needlessly. Yes, infuriating! So I’m a big proponent of vaping during chemo. It’s not for everyone. But I’m happy to keep talking about it on the off-chance it can benefit someone else. I intend to vape from the beginning of chemo this time and save myself the pain. There is also a licensed synthetic drug called Nabilone that can be prescribed for nausea in chemo so I may give it a try too. But it’s something you have to insist on.

    Oh unconditional love made me cry. What a joy to receive it. I too wish I could hug you tight and watch our kids play while we drink coffee in vondelpark. Let’s do that soon! Love you.

    Love you all xxxx

  9. Paula

    Heidi, you have a date!!!! Alice still mentions Lilah as “that nice bigger girl who speaks English.” As accurate as always, hehe. Totally, let’s do that again and hug and drink coffee and hug some more. Getting pretty emotional over here, as well. Love you!

  10. Karen

    Wow Heidi, how lovely to read of the amazing hospital experience you’ve had. I am so glad that they were fabulous. I am so glad too that you have a good feeling of trust in the people who will be looking after you next week. That is fantastic. They do sound lovely. I am so happy you are getting the care you deserve.

    Can I join you for coffee in Vondelpark? xxxx

  11. Linsey

    This is great to hear. Buzzy’s experience was far more like this so I am so pleased that u are getting the right experience now. A beautiful day and a beautiful garden to help support your soul and by the sounds of it a great team of professionals. You can do this. Sending you lots of hugs and love.xx

  12. Heidi

    Oh I’m glad to hear your friend got such good care Linsey! We all need it. Sometimes mind and soul get neglected and such a relief when they’re not.

    Karen darling, yes yes yes to coffee in Vondelpark. Dinner at Abyssinia after? Summer 2018 when all this shit is done?

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