I have been living with this incurable cancer for 12 years. And I do appreciate how lucky that my condition is managed at home and I have not had any time in hospital since 2014. The last time I had to attend A&E was the time I was diagnosed with metastatic sarcoma back in 2014 and it was mayhem then. I spent the first night in a queue of trolley beds, in a corridor, waiting to be seen. The memory of that first night in A&E has stayed with me, and made me more determined not to go unless it is really, really necessary. They also kept me in for 14 days, so my anxiety around A&E has always been there.
Sunday night I awoke with a pain in the area of the top lobe of my lung. The pain was in my back and felt like a knife in my back. It was horrendous, I couldn’t stay laying in bed and had to get up. I took some paracetamol and by morning when mr Simo woke, it had eased, but was aching, and there was pain under the ribs when I breathed in. I decided to phone my sarcoma nurse, as my thought was I might have a blood clot and should probably get an x-ray. My sarcoma nurse agreed that it could in fact be a blood clot, and told me off for not calling an ambulance. She told me to call 111 ( that’s not an easy process these days, I was cut off twice) which I did, and an appointment was made for me to attend A&E for an X-ray.
I arrived at my appointment time of 2pm. The traffic to the car park was backed up onto the main road, but hubby managed to drop me off and he continued on to find somewhere to park. I could already see from the outside how busy A&E was as there were several people sitting on the ground outside the main entrance. As I entered to go to reception, a man who had been sitting in the waiting area approached the desk in front of me. I could hear him ask how much longer he would be, as he was feeling very sick, and was concerned that the batteries that he has swallowed were burning through his stomach! Welcome to A&E!
The receptionist booked me in, and said that as I was immune suppressed they would find a waiting area for me, but for now to take a seat. There wasn’t a seat. There must of been 80 people in a waiting area with half as many chairs. There were people sitting on the floors or standing where they could. I found myself a little corner, and was only there a few minutes when I was called. The looks I got from all those poor people that had obviously been there for hours, when I was called through within minutes!! I could feel everyone’s eyes on me as I was ushered straight through, but thankful I didn’t have to wait in such an environment.
In my room there was a bed, a chair and a sink. Within an hour I had been assessed, had an ECG which was normal, a chest xray and bloods taken. As they were investigating me for a blood clot on the lung ( I’ve had them previously) I asked if they were doing the D-dimer test to check for blood clots, and was told not at this stage as that needs to be requested by the doctor. At this point I sent mr Simo home to be with our little dog who was home alone, and said to come back in the evening to pick me up. If only it had been that simple. So mr Simo left at 4, I saw no one for the next few hours. I was pacing up and down inside my little box feeling like a caged animal. I popped my head out of the door to see if anyone could give me an update, to be greeted by a young man throwing up into a waste bin outside my door. Eventually I managed to ask someone for an update, and she said she would get someone to check for me. No one came for another hour, then a nurse came in and said “oh I’m sorry I forgot about you!”
He then said the doctor would be with me shortly. The doctor did come in with the reassuring news that the chest Xray looked fine, very similar to how it looked at my last chest Xray. But she said I needed a D-dimer blood test to determine whether I had a blood clot. The same blood test I said I needed at 2pm, was requested at 830. The nurse took the blood at 915 and said the results would be back within 3 hours! So 7 hours after coming in for a booked chest xray, no one had asked if I needed pain meds, no one asked if I needed a drink, not even a water, for most of those 7 hours I was by myself feeling like Harry Potter in the cupboard forgotten about. At this point my dad arrived, he got me a cup of tea, and sat with me until midnight when the results finally came back to say I did not have a blood clot. But instead of the response I was expecting to say I could now go home, she said that I needed to stay in and wait for a ct. I looked at her, I said so my breathing is fine, the pain has gone, my stats are good, my xray is good, but you want me to stay in for a ct which will happen tomorrow? I’ll come back tomorrow! Let’s free up this bed for one of the many people laying on the floor in the corridor outside my room, take out my cannula, I’m going home!…..a lot of back ward and forwards while she checked with a more senior doctor, and at one o clock I was leaving the hospital.
This morning I received a call from A&E about the CT. They said that as I was seen in A&E I would need to have my CT done in that unit, but as that CT was used for all emergencies and as I am not an emergency I would need to come up and sit and wait until they could squeeze me in. He said to be prepared for a long wait. I refused his offer, and said I would phone my oncologist. Don’t get me wrong, if I felt a) breathless b) felt unwell I would of course go straight back up there. But I don’t, the pain has gone, my breathing is fine, I am happy to have a CT but give me an appointment!! So frustrated with the whole system. Why I wasn’t sent to acute oncology I don’t know, but one thing is sure, this has reinforced my thoughts about A&E and whether it is the place to get help for my disease.
What a horrible experience chellesimo but glad the underlying problem seemed to settle. I have had the misfortune to have to go to A&E once, sent there by acute oncology as it was after 6pm. It taught me to hold on until the hours when the oncology acute assessment unit is taking people in, if at all possible.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
I have now said I will only go up there if it is to acute oncology. Stage 4 cancer patients are not an accident or an emergency they need specialist cancer care, which is exactly what acute oncology is for. Hopefully I do not need to worry about this again for a while. X
To add some more deadly A&E experiences into this, this is the blog post I wrote after my aforementioned trip to A&E in September 23. I still wonder what had happened to Monica in the next cubicle. community.macmillan.org.uk/.../serious-adverse-immunotherapy-event---the-a-e-story
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
I do hope if I ever have to go there again it will be better now they have their swanky new A&E. I will try to avoid the one I suspect you visited!
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
Very pleased to hear the problem resolved itself, but horrified at your experience in A&E. I've read articles in the papers about this but never imagined it could be that bad.
All the best, Derek.
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Hi Chelle
These stories are awful but typical of the system at the moment..
3 days after my first infusion I rang the red card number because my temperature was way up. The ward said they had no beds so I needed to go to A&E. Arrived about 8pm, and at least was put into an isolation room straight away. After a lot of gaffing I was eventually put onto antibiotics (but way past the time frame recommended). My temperature had started to drop luckily.
I was then admitted to the ward at around 0100! Another drip, then saline added, then admission process- weight etc! Then at 0409 the doctor came round and said that the bloods looked ok but infection marker was high. Needed an opinion from the Consultant! 0600 the morning rounds, temperature etc; Then breakfast at 0700 - by which time I had lost the will….
Consultant appeared around 0900 and said all ok but you did the right thing and you can go! Took about an hour for the discharge letter..
So after a completely sleepless night I got home mid-morning.
So the next time my temperature spiked I just sat at home with the thermometer in my ear until it went down again into the safe zone. I did mention the spike at my next infusion and got a very polite but firm telling off for not going in! I just couldn’t face that again.
It is crazy but the service is so under pressure. When I worked in the NHS we spoke about Winter Pressures extending to include much of the year - we worked on July being a quiet month. The heat wave this year has blown that out of the water so staff are not getting a chance to recuperate or reset.
The system is not working!
KrisPy
Stay positive, be strong
KrisPy
