Tag: oncology appointments

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

On By Jackie ScullyIn Chemotherapy, Reflections on cancer2 Comments

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! 

Breast cancer lesson number 61: Great care comes from people, not bricks and mortar

On By Jackie ScullyIn Chemotherapy, Reflections on cancerLeave a comment

‘Never judge a book by its cover’ is a phrase that could easily apply to hospitals. With perfectly painted walls and shiny equipment often comes an expectation that the care will somehow be better. But, the truth is, when it comes to treatment, it’s the person administering it (and of course the treatment itself), and not the room in which it is administered, that really matters.

Don’t get me wrong. I smiled when I saw the comfortable chemo recliner chairs (although I never did work out how to put my feet up) and the bright cancer day unit suite with its great views. And, I’m not sure standing room only is the right look for a cancer clinic. But, when I think back over my time in hospitals over the years, it’s not the flashy equipment or the chipped paintwork I remember. It’s the people – and usually the ones that have made me smile.

It was my faith in the team treating me that made me put people before private cover after my initial diagnosis. My Breast Care Nurse admitted that the only difference between private and NHS treatment for cancer was the environment and not the speed at which things happened. In fact, if I had called in my cover, there would have been a delay while the diagnostic tests were redone and the diagnosis reconfirmed. I liked my team, I liked the way they treated me, and the blend of kindness and humour that worked well with my temperament. I wasn’t going to trade that in for a private room and artwork on the walls. Looking back now, I know I couldn’t have made a better decision.

It’s not often I leave hospital with a huge smile on my face (just doesn’t feel appropriate on most visits). Today, however, I did. Admittedly, this was, in part, due to giant carrier bag of drugs I had managed to secure for myself at my oncology appointment to help control the side effects from chemotherapy (never before have I been so excited about getting mouthwash on prescription). But, it was really down to the kindness and care shown by those around me – from the smiling barista at the café to the warm receptionist at the Cancer Day Unit.

I started the day with an early-morning reflexology and aromatherapy massage session courtesy of Dimbleby Cancer Care, a free service designed to offer support and care for people living with cancer (be that patients or family members). I don’t think I have ever started the working week by being coaxed into a state of relaxation and covered in a thin layer of lavender oil. It was amazing as both a source of escapism and a chance to chat to the lovely lady rubbing my feet and back. Instead of lying back and closing my eyes, I quizzed her on everything from her nursing past to her experiences and downloaded all my latest recommendations (from bold beanies to PICC line covers). The best part? It wasn’t the wonderful scent of the oil, the free bolster cushion (for extra PICC line protection in bed) or the fact that my back knots almost melted under the pressure. It was the moment at which she said she thought I was an extraordinary person. I’m not sure my Monday mornings will ever be as soothing again.

An hour later, I was sat in front of another nurse experiencing the easiest blood test of my life thanks to my trusty PICC line. Little did I know when I sat down for my ten-minute appointment that we’d cover everything from her singing ambitions and band to her love of children’s medicine and shift-based work. It was nice to feel like I was chatting to an individual with hopes and dreams rather than a lady in a blue dress with yet another syringe of saline solution.

Next stop, the oncologist. Three weeks ago, he told me he would be behind me 110%. And, true to his word, he was. The appointment was less about having a nice chat and more about him furnishing me with the contents of a small pharmacy. With extra Domperidone (bye bye nausea), Zoladex, Corsodyl and Difflam, plus soluble paracetamol and codeine (to experiment with as a mouth rinse because he’d seen it work before), I feel ready to tackle chemo 2. Even the oncology receptionist wanted to add in a mouth ulcer-related recommendation when I popped back to get the prescription adjusted a few moments later.

Finally, there was the smiling man at the pharmacy desk. He took great delight in both booking me in early (while I popped back to the clinic to amend my prescription) so I wouldn’t have to wait, and then walking me through my medical goodie bag. Service with a smile is often hard to find in the capital, which makes the experience even more satisfying.

I couldn’t describe the contents of the oncology consulting room, the massage seat, the pharmacy or the blood test cubicle in any great detail. That’s not because I’m not observant. It’s because, when the care is brilliant, there really is nothing else to see.

So, if you ever find yourself looking up at a tired hospital block, think not of the peeling paintwork, but of the people inside willing you on. For when you close the consulting room door one last time, it will be the kindness of those caring for you – rather than the chair they sat on – that will stay with you forever.