WARNING – This blog contains some straight forward, no nonsense complaining and absolutely no humour whatsoever
Yesterday was my first day of treatment for Transplant Number 2, officially known as Day-6. Yesterday, will unofficially be known as my worst experience of NHS care. Yesterday was also the day I did something I said I would never do, and it was the day I shouted at a Medically Trained Person. Twice. I am part completely ashamed of myself and part sitting in my flat, wishing I did not have to return back to that hospital today.
I feel ungrateful and belligerent. The bottom line is that St Bartholomew’s Hospital is doing a very expensive procedure on me, that my hospital would not do. That is the bottom line. It’s a procedure I need and without it, you could all but guarantee that I would not see 2025. My brain told me this many, many times yesterday. Why should I expect any extras like a smile or good communication. The NHS is overworked and thus should they only be expected to plan and deliver the treatment because that is all they have time for. Perhaps there is no time for niceties. Doctors and nurses work long hours and inspect faeces, that is something worthy of everybody’s respect. I should just be thankful that they are giving me the treatment I am getting, shut up, express my gratitude and get on with it.
That would make for a short blog though.
I did not feel comfortable or comforted once yesterday. I felt like a nuisance. The more upset I felt, the more tired I got and the more agitated I became. I walked into that hospital feeling hopeful and left feeling deflated and weak. I exaggerate not. I got home and slept for 12 hours plus extra snoozing, how much of that was due to the chemotherapy or to my experience I do not know. I can assume that the anxiety I felt for most of the day, was not a good starting point for my treatment.
I have spent just under three years experiencing a rather marvellous service provided by the NHS. I do not know the budget differences between the two NHS trusts, but I think I can safely assume that UCLH is also operating within tight financial constraints. UCLH often runs with delays, I know this because I have in my time experienced them many times over. Delays that would allow for a screening of Gone With The Wind with an interval and lunch. Yesterday, I remembered with longing the five hours I once had to wait for an injection of Velcade. As annoying as that was, it was explained to me and the bad news was delivered with a smile.
It is not fair for me to compare the two hospitals, but it is incredibly difficult not to. I do not know any better.
When it comes to the NHS, I like to consider myself a seasoned veteran. I am no stranger to a busy ward, red tape and a strange system for dispensing medication. I know full well that I have been spoilt at UCH’s Macmillan Cancer Centre with it’s comfy red seats and foot rests. I knew that going in and I levelled my expectations appropriately. At least, that is what I thought.
Perhaps yesterday just wasn’t my day. Perhaps it wasn’t the hospital’s day.
Prior to my treatment starting, I had agreed that I will have my treatment as an outpatient for as long as is possible. St Bart’s does offer an ambulatory care, which is referred to as the ‘Hostel’, something, I am told, should not be compared to the Cotton Rooms at UCLH. I was given the option of staying there or at home and stay at home, in my own bed, I chose. The plan is for me to come in for five days in a row for treatment. Before yesterday, my expectations on how the conditioning was going to pan out was based on my word processed itinerary. Plus an added hour or two on each day, based on my very own My Myeloma experience.
Yesterday, I arrived at the hospital at 10.26hrs and left at 17.25hrs.
Big whoop I hear you full timers say. People will have worked for longer yesterday, the people treating me will have had a longer day, but for me, that is a long day. It was a very long and frustrating day. It started promisingly, on arrival I was taken straight through reception and I was told that the order of events was as follows;
• have my bloods done
•PICC line inserted
•See doctor for final go ahead
• Receive the chemotherapy.
On the face of it, that is exactly what happened, minus the massive gaps of lost time in between. Massive gaps.
Am I asking for special treatment? Am I being the ‘princess’ a nurse once called me during Transplant Number 1 the First? I worry that that is how I am perceived. The complaining heifer.
It was not until after I had had my PICC line, an x-Ray and waited 75 minutes to see a doctor at 13:35hrs, that I was told that I should expect to be in the hospital for a while. When I met with the doctor at 13:35hrs, I was told that they could not prescribe my chemotherapy until they had received my full blood count results. Results that they had yet to receive despite the blood leaving my arm at 10.30hrs. To give you a little perspective on this, it takes 15 minutes at UCH. A point I reiterated later in the afternoon along with the fact that my bloods would have been tested quicker had I gone into an A&E. An A&E is not a specialist oncology and Haemotology unit.
Fast forward to 14.15hrs, I was informed that the chemotherapy would be ready at 15.45hrs. Exasperated, I decided to use this time to have a nap. At 16.40hrs, a nurse hooked me up to an unexplained something. Experience told me it was just a flush, but I did not know if the chemotherapy had been added to the bag. Fifteen minutes later, I discovered that it was not my chemotherapy because two nurses came along with the chemotherapy.
I cannot begin to describe how frustrating it was not knowing how long I was going to be there for, and the estimated times I was given not being followed. I became more and more agitated as the day went on, and I did point out during one of my rants that if somebody had told me sooner that it was going to take six hours to get the chemotherapy in me, I could have left and come back. There were several opportunities for the Medically Trained People to do so, but they did not.
The delays were bad enough, but apart from the kind ladies who put in the PICC line, every encounter with a Medically Trained Person was cold, clinical and distinctly lacking in communication. At one point, two people treating me spoke to each other in a different language. One of the nurses told me that if I was concerned about the wait, I should just be thankful that they put the PICC line in without waiting for my blood results.
After the PICC was inserted, I was required to get an X-ray to ensure everything was tickety boo. I am familiar with an X-ray, but I was not familiar with the process of being taken into the X-ray room and being instructed to change without a curtain whilst the machine was set up. Similarly, I did not expect two women and a man to be walking around the room whilst I attempted to put my bra on after they had completed the X-ray.
Again, do I expect too much?
I am by no means squeamish, and as I fully understand the need for people to be medically trained, I did not mind when I was told that the person inserting the PICC line was doing it for the first time. I did struggle with the educational narrative and corrections that came from the supervisor throughout the procedure. With every correction, I could feel the tugging and the cutting and I become increasingly aware that I had a hole in my arm with half a metre of tubing entering my body . Fortunately, I had some tools in my arsenal and towards the end, I found Julie Andrews singing ‘My Favourite Things’ in my head on repeat. And then I didn’t feel so sad.
At some point in the middle of the day, I started to cry. I then cried a few more times. I was alone in a new hospital, where nobody knows my name and nobody seemed to have a desire to learn it.
It was too much for me.
Expecting a prescription that I was told would be there and was not, was too much. Explaining to the doctor that I needed one anti sickness pill and not the lesser anti sickness pill, to then be given the lesser anti sickness pill three hours later was too much. Being prescribed less laxatives than I require and asked for, was too much. Not having my questions answered about the immediate side effects of the chemotherapy (I’m talking poop) by the doctor and nurse I asked, was too much. Trying to arrange my treatment times for Saturday and Sunday and being told that they cannot be booked in more than 24 hours ahead, was too much. Asking how it will work with my daily checks after Day 0 and being told to ‘just concentrate on my chemo’, was too much. Listening to an elderly gentleman scream out in pain as a staff attempting to give him a new cannula was too much. Being told that I should have known that ‘Day One was always like this’, was too much.
I have often said that I would never shout at a Medically Trained Person. In April, during Transplant Number 1, I saw a lady get angry with the staff in Ambulatory Care. Initially I felt angry that she was talking to the staff that way, but when she explained that nobody had explained what was going to happen to her and that she was scared, I understood. I am at a new hospital and I do not know how things work. Yesterday I was told to sit in a seat and wait and at no point was I told in clear terms what was going to happen and how it was going to happen. There was no introduction and no explanation. I imagine that this is what boarding school feels like.
I just have to like it and lump it. God knows how many days of this I have left.