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Something New

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. 

EJB x

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Ice Breaker

I giggled to myself two nights ago in bed, and I giggled with Mamma Jones last night in my bed. The exciting life I lead. I was giggling because after my day out on Tuesday, I realised something. I realised what transplant related story, I was happy to share with people as a form of banter, to get out of the inevitable questions I am going to get when I return to my beat. At the moment, one thing is true, I cannot talk about my transplant and illness without feeling emotional. I know for a fact that I would not want this emotion to happen in public, so, there has to be an accepted topic that I can get animated about, and use to portray, that cancer is not a big deal at all. It’s dead easy in fact. The accepted conversation is going to go something like this:

Caring Individual: [they may or may not be inclined to tilt their head to the side] How are you? How are you feeling?
Me: Fine thanks [pause and hope that will be the end of the conversation]
CI: So, are you feeling okay?
Me: [smiles] I’m just bloody relieved those burps have stopped. They don’t tell you about that one. I just burped all the time. Sip of water, burp. I was burping all over the place. And the strange thing about these burps, the sound of my burps changed…. I’m a big girl. I can do some big burps, but with the transplant, I did baby burps. Teeny tiny, cute little burps…. It’s all linked in with tummy problems I had following the chemo. It was just bloody embarrassing. Imagine, you and I could be having a cup of tea, and uncontrollably, I would have to burp in your face. All the elegance would go out the window. Gosh, [fake laughs], that wouldn’t have happened in my former life until at least six pints of Kronenberg. [Still laughing]
CI: [content] wow, that is so strange…

Me: Yeah, so like I said, I am feeling much better.*

I suppose, I could take somebody’s wise and dogged advice, but it does not work. I have tried it for 362 days. Obviously, there are some people to whom I would share more information, but there is a time and a place for these things, and it is my experience that the probe comes at the least suitable time, without a curtain, in full view of strangers and/or people whose view of me should be ‘bad ass’. I need a plan. I need back up. And this is it. Just do not tell anybody.

I would also be willing to share with people the fact that I have lost all my bum hair, but that sort of thing should be saved for the close friends I think. Society tells me so.

EJB x

* subject to some improvisation if required. May include a demonstration.

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The Little Princess

Yesterday, I was absolutely positively excited and relieved when Mamma Jones entered my hospital room to tell me I was being moved up to haematology. It was even better, I was moving up to T13, back with T13s Angel.

What followed after that, seemed like an incredibly long wait until the porter arrived to wheel me up, it may have been a long wait, I currently have no concept of time, so it could have been 10 minutes.

It was a long wait in my time, because by yesterday morning, I was truly dissatisfied with the treatment I had received after coming through A&E. I had been put in a private room on a ward I was well acquainted with after last year. The room was not clean. There was blood on the floor and somebody else’s urine in a jug in the bathroom. Mamma Jones found a bogie on a wall. It was just, not nice, and it set off an uneasy night, which was made worse by the nurse’s response to my concerns about the cleanliness. She was coarse, dismissive and appeared to have no understanding of myeloma nor what being neutropenic meant. Upon arrival I had asked for some more morphine, and she said she would bring it in 30 minutes because it had not been two hours since my last dose; it did not come. She advised me, neutropenic and all, not to touch a lot in the room if I was concerned about the cleanliness, that comment made me itch. I also asked for some water, which I finally received at 07:00hrs. Prior to that, however I was given 11 pills to swallow, fortunately I had taken my own water. When my water was delivered in a jug, I asked for a cup, and I was told that there were no cups available. I did not drink the water.

During the night, I requested some drugs which the on call doctor had prescribed me. The ward I was on did not have these in stock, and another nurse said that the pharmacy would dispense it in the morning. She had tried to source the mouthwash for me, but failed, but was able to give me something similar, so I was thankful that she had tried to help me. In the morning, I then queried this again with the nurse with the jug, and I was told that she would not be able to give me any additional drugs until I had been seen by the doctors and as I should not have been there, she had no idea how long I would have to wait. I responded with a smile and condescension and explained that I had been promised the drug the previous night, and that she did not need to wait for a doctor because a doctor had prescribed it on my file. After a few minutes of her arguing with me, she then grabbed my file handed it to me, and said that I should point it out then. I did just as she asked, and she left. I did not get the drug.

As I waited for Mamma Jones, it was clear that people had no clue about me. Nurses, porters, cleaners and other staff wondered into my room without washing their hands, or they left my door wide open. The cleaners for example had a conversation with each other in my room with the open door about my complaints about the cleanliness. At one point, I heard somebody outside my room say ‘no,no, no, you cannot go in if you have a cough… She’s got something which means she can get more ill’.

When the porter finally arrived, I was tired and ill, but I was ready to be moved. We were accompanied up by a new nurse, who was, odd. Odd is the best and most appropriate word. After I was out of the room, and Mamma Jones was gathering my belongings, she said ‘have you got your tiara?’ I was confused by life in general at this point, and responded as such, to which she responded with ‘you know, little princess’s have tiaras’.

I am 29. I have cancer. I am in the middle of a transplant. I am no princess. Try a day in my shoes you haggard, spent too much time in the sun, horse faced wench.

This made me angry for the rest of the day, to be sure. The anger grew however, when thankfully, I returned to a place that 11 months ago, made what was happening so much easier, and I encountered some exemplary care. There is no other way of describing it, though I am pretty sure I will try during my staff.

It may not be that haematology nurses are any better than other nurses, but for me, they have something that makes it easier to manage my illness, so imagine what wonders come out when they are treating somebody who is having a transplant. Yesterday, one of the Angels had to go through some of my excrement for medical purposes. Unbelievable.

It seems to come so easily to them, and that made me angry, I could not see why the handful of nurses (they do not deserve my usual moniker), would spoil it for a majority. Fortunately for the dear, sweet wonderful NHS, I am with Medically Trained People all time and I see the good they do. If, however, my experience had existed solely of the hours I was in yesterday, then well, the less said the better.

Maybe I am a princess because my main Angel (for you get a lead), told me that she was happy that she had me and said when she saw my name on the list of patients she hoped I would come to T13 because she remembered me from last August. Yep, that gives me a big head. It upset me at the same time, because I do know what I did differently with the nurses down on the first floor.

As the day progressed, the main Angel was angered by the earlier comments by the woman, and raised it via the Angel Sister, who by the way, is also very nice. Not at all scary, which is always a bonus. To cut a long story, slightly short, the nurse thought she was being funny. As for the cleanliness, I will be complaining about that in due course, but I am just thankful that I got out of there.

I am told that whilst I may change rooms at some point, I will not be leaving T13, and to that, you can get an Amen. The illness is definitely here, in all of its glory, and I need to be in a place where everybody knows my name, or at least, be somewhere where the care as at the absolute highest of nursing care.

I believe I am where I should be, and my, is that, and the IV, making this much, much easier.

EJB x

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The Cottam Room

After a period of mysterious wonder, yesterday afternoon, I was finally able to discover what The Cotton Rooms, the hotel, is like. I can say, that it is much better than I thought it would be. Fancy. According to the Receptionist, the hotel or, as I like to view it, the half way house, is to the standard of a four star hotel. I believe it is indeed a four star hotel, the only difference is that it is full of sick people and their carers, with an essence of community spirit, and it is all free. Everything is free. Free, free, free. Thanks NHS. The care you provide is just marvellous.

x

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Sweaty, obese cancer chic

When Big Sister and I walked into the small lobby yesterday, we were quite impressed. I am positive, absolutely positive that my first impression was heavily influenced by the air conditioning. I bloody love air conditioning, especially when it is 30 degrees outside, and every crevice is leaking.

We checked in and received a royal tour and escort to our room. This place is equipped with a lounge, dining room with two microwaves, laundry services and air conditioning. Did I mention the air conditioning? Myeloma is a small price to pay for comfort in this heat. Our room was huge, with a delightful view of the BT Tower. Unfortunately for me, it was the only room, where the AC had decided not to work. It was warmer in there, than the outside world and I made the rather unpleasant mistake of sitting on one of the leather chairs. You can imagine what happened when I stood up…. I hope they have disinfectant. And so, after a few visits from the handyman, we were transferred to another room. Essentially we were downgraded to a room half the size overlooking the Macmillan Cancer Centre. It had to be done; there was no other option. I do not think a body would want to stay in a fifth floor room, in central London where you cannot open any windows, with no air conditioning, let alone a person gong through the fake menopause. I need cool air, I’m a big girl after all.

The rooms themselves have everything a gal could want. I have wifi. Yes. I have a DVD player to go with my big TV. Yes. I have a fridge. Yes. And finally, a safety deposit box for EMan. Yes, Yes.

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The breakfast isn’t bad either. Big Sister was most impressed by the fact she got a full English as well as me. I think she was less impressed by my insomnia, nor me waking her at 06:30hrs in a panic because I thought she was dead. Thank goodness we have separate beds. I wonder how Mamma Jones will fair this evening, will she appreciate the Piano soundtrack at 01:00hrs?

I am still cannot see how my transfer will work, and not knowing when it will happen makes more difficult to comprehend. How much do I unpack? How will I get to the hospital? Might I actually have to call an ambulance? Nobody knows. As nobody knows, I am just going to try to go with the flow.

It may be nice, but there will always be one place I would prefer to be. Soon, soon.

EJB x

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How Not To Greet A Myeloma Patient – Part II

I feel for the people in My Network. I suspect, though I am not entirely sure of it, that with regards to me, they have to reach and maintain the delicate balance of treating me like normal, as the person they have always known whilst acknowledging that I do have an illness that is shitter than shit and for this reason, I do need the occasional TLC because I can be emotional and sensitive. Emotional and sensitive. Believe it sisters. I wish I was neither, but hey ho, life is not that kind. If I am honest, I do not know what the right balance is, so deity help The Network.

With some people it’s easy; it’s a given. Housemate for example, could tell me that I look like a sack of potatoes and smell like farts, and I’d still wash his pants. For others, I think it is more difficult, but after ten months, I think we are working through it and I am comfortable with the way things are. Bar the occasional bout of paranoia, anxiety and self loathing, but this existed long before I contracted this deadly disease. These people have seen me multiple times since I was diagnosed and have a good working knowledge of My Myeloma and what it and the changes mean, and I am most thankful to them for that. It doesn’t take a genius to work out that a knowledge of the cancer and my treatment, would assist people with knowing how to manage my mood and what I need on any given day.

For people who I do not see regularly and who do not know a great deal about myeloma, perhaps even, how to spell it, it is more difficult. I do not know how I would be if the situation was reversed. By ‘being’ what I mean, is I do not know how I would show that I care about somebody if they were 29 and had myeloma. It too is a delicate balance.

For me personally, there are certain things that I hate when it comes to me coming face to face with another human being, who I knew once upon a time. Loathe it actually, to the point where if I can predict it coming, I will not go. It is an inevitability that on seeing somebody who I have not seen for a while, My Myeloma is going to monopolise the conversation. It will now, forever be, that way, and there is not a great deal to be done about it. People care about me, I assume so anyway, and want to know how I am, yadda, yadda, yadda, blah, blah, blah. Blah. It is nice that they do obviously, but like I said, there are certain things, in regards to this, that I hate more than I hate cherries and I hate cherries.

Firstly, if you approach me and tilt you head to the side, I am automatically going to think ill of you. If the head tilt is accompanied by a frown and/or something that resembles a sympathetic noise, you would have lost me for the rest of the conversation. I have witnessed this on many occasions since I was diagnosed. At the start, I could stomach it, but now, ten months on, I cannot. Yes I have myeloma, and yes, I have a shortened life span, but, I do not want to see that in people’s faces when they talk to me. There is a difference between sympathy and pity, and the head tilters fall into the latter category and that is just not healthy for me nor for them. It’s a look, which makes me feel like a dead woman walking. Every time. I hate to point out the obvious, but this makes me sad. It makes maudlin thoughts set up camp in my head.

What follows, in this particularly scenario is the ‘how are you?’ A simple, caring question to be sure, but again, if during my whole response to said question, if the person continues to look like they have one ear heavier than the other, I am going to get frustrated. The frustration grows if their concerned demeanour switches to confusion. A week or so ago, I happened to find myself in the situation where I was confronted with several people who had too much wax in their ears. I am no stranger to the roadshow, but around every corner was a head tilter intent on talking to me like I have had a lobotomy. This brings me on to the second thing I loathe. They would not leave me alone, nor drop the subject of myeloma.

Myeloma, myeloma, myeloma, myeloma, myeloma. Bloody myeloma.

Way back when, many moons ago, I said that I did not want My Myeloma to define me. At the time, I was referring to me and my personality, my being. I did not consider what other people’s perception of me would be, and whether in their mind, I was going to be become my illness. I have been thinking about this for a fortnight, and unfortunately, for the people who would not take my standard briefing about my illness and demanded more, in their eyes, I am no longer just Emma. I am Emma with myeloma. I could basically be myeloma. Correction, I could be cancer, for myeloma may be too specific.

I have spent months trying to perfect the polite response to the ‘how are you?’ and then move to subject on.* I even practice it at home. Two weeks ago however, I learned that in some cases, this was not sufficient. When I responded saying I was fine, people doubted the sincerity of my reply and said, ‘no really, how are you?’, whilst looking at me like I was having a nose bleed. My internal monologue’s response to this was straightforward, it simply said ‘I do not want or need a counselling session, go away (or something um, similar).’ What actually came out of my mouth was ‘I’m fine, I manage and I cannot ask for more.’

The point I am trying to make, and I am using a lot of words to make it, is that the inquisitive head tilters make me feel like I am dying. Not only do they make me feel like I am dying, but they make me feel like I am a child dying only after my personality and 29 years of life have been brutally murdered, buried, eaten by maggots and forgotten. And all the time I feel this way, I look back at them smiling, because I do not want to appear rude or weak. I freely acknowledge that myeloma has made me boring, and it stops me from doing what I want to do 80% of the time, but it has not become all of me. Not yet. I have more to offer than My Myeloma, for I am not and should not be defined by it. Some people, just did not get this message.

In all honesty, I would be upset if somebody did not acknowledge ‘the situation’, but there must be a better way than making me feel like I am less than I am. There is a better way, I just cannot quite put my finger on defining it, but it does exist. If it did not exist, I would go about this earth irritated by everybody and everything, when in reality, there are only a handful of people who have made me feel like the end is nigh. The best meetings I find now, are the ones in which I do not think about them afterwards.

Talk to me about My Myeloma by any means, but be aware, there is more to offer. Maybe, and this is just a suggestion, we could talk about you? Just for a little bit.

My name is Emma Jane Jones and I am an ungrateful monster. With myeloma.

EJB x

* There are still several occasions in which I find the need to talk about my illness and I do. Like a said, a delicate balance.

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