Breast cancer lesson number 84: You’re a person, not a hospital number

There are so many things I love about the NHS. There is, however, one thing I don’t. It’s the administration. Why do I have to be the one to join the dots? Why is it that when there are plenty of other things for me to worry about, is it the one thing filling up my thoughts by night and my mobile minutes by day. The NHS is made up of wonderful hard-working people who really care. It’s just such a shame the systems connecting those people together don’t.

Today’s administrative conundrum reduced me to tears. Here’s why:

1)    Three weeks ago, my oncologist in the Monday clinic took the decision that, having coped so well with the first round of chemo, I could be referred to a nurse-led programme for the remainder of my treatment. I happily agreed and was booked in for an appointment on Wednesday 7 May. Tick.

2)    At my second chemo session on 23 April, the receptionist informed me that I couldn’t attend the clinic on a Wednesday if I am to keep my three-week Wednesday cycles. Wednesday 7 May is a week before round three and therefore too early for blood tests. She suggested I call the breast care nurses to schedule an appointment at the Monday clinic again. Made sense to me!

3)    The breast care nurses were lovely as ever and confirmed that a Monday clinic appointment was needed and, a few days later, a letter arrived through the post. They cancelled my nurse-led appointment. Tick.

4)    Yesterday (Wednesday 7 May) I received a call querying why I wasn’t at the hospital for my nurse-led appointment. I explained the situation and the fact that I was led to believe the appointment had been cancelled. The lady informed me that I no longer qualified for the Monday clinic (I guess because I am a relatively well sick person) and that this appointment would need to be cancelled. Instead I would need to attend the Wednesday 14 May clinic at 10am and then have my chemo at 11am the same day. I agreed.

5)    Once the call had ended, I felt a bit concerned about the timings. Usually a blood test should happen about two hours before chemo so that the results can be processed and the chemo drugs prepared. As a result, I decided to double-check the timings at my PICC line dressing change appointment this morning.

6)    The receptionist confirmed that my Monday appointment had been cancelled, but that the nurse-led appointment was 11am (not 10am) and therefore at the same time as chemo. She added that I am not supposed to have the two on the same day (had I not queried it, I imagine my chemo would have been cancelled when I turned up next week). Wednesday clinic means Friday chemo. She confirmed that my chemo would now have to be moved, at which point the tears started to flow.

7)    After a few more calls, the receptionist confirmed that I would need to come to hospital on Wednesday for blood tests and to see the nurse. I would then (providing the test results were positive) need to return on the Thursday for the drugs. From chemo four onwards, I would need to attend the Wednesday clinic with Friday chemo. Happy Friday to me!

In chemo land, two days is a long time. By nudging my chemo to the end of the week, three months of careful planning (weddings, parties, training, holidays, train trips) were thrown into question in the space of half an hour. I am determined to make every single event. I just wish I didn’t have to dig deep (and maybe even pack a my old washing-up bowl) to do so!

I get it. Put the well people on the Friday list so they won’t clog up A&E on a Saturday. I don’t mind being a well person (the alternative is not particularly attractive). It’s just not great to feel that no one really wants to see you and that I am being shuffled around the system to make room for everyone else. I need someone to help me control the vomiting. I want to discuss my ice-cream headaches and my taste problems. I need my next Zoladex prescription. Plus, my diary is just one big mess of scribbled out appointments and I like tidy pages. Even my appointment card has tip-ex on it!

I have a voicemail message on my phone. I think there’s an apology coming. I just wish I didn’t have to let the tears flow to get it – and a proper appointment.

This cancer stuff is hard enough without having to worry about getting a seat at the clinic (or a chemo chair). I’m a person (and a very accommodating one at that), not a hospital number in the system. Dear NHS, please don’t forget me.

NB: as an amusing aside, I met someone for lunch today who I hadn’t seen for years. I was out in Suzie (he didn’t know, so I thought it only fair to act normal). What was the first thing he said to me? ‘Wow, you’ve changed your hair since we last met.’ He will never know why this one sentence made me smile so much. Suzie is obviously pretty convincing! 

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