Category Archives: NHS

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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Training

My requirements on Monday were not restricted to signing my life away. Some people work out before a marathon, my pre marathon training is something else all together. In order for Transplant Number 2 to go ahead, I had to have a collection of tests done, the purpose of which, I think, was really for me to get used to the grounds of St Bartholomew’s Hospital and not for the Medically Trained People to see if my heart, lungs and kidneys are tickety-boo. Okay, maybe checking that my body is up to the challenge of an allogeneic transplant had a lot to do with it, but the morning meant five reception areas and their accompanying waiting areas, four medical technicians, one nursing assistant, one doctor, a room of Clinical Nurse Specialists and one trip to the loo. Essentially, I went into a lot of rooms. For me, it significant energy usage and exploration. I have somewhat expertly denoted this on the map below, each dot represents an area requiring my attention. It does not include the lift journey that came to a sudden halt inducing panic among everybody in it that the day out to the hospital had taken a sinister turn.

  Medically, I was required to have an echo, an ECG, a plethora of blood tests, a urine test and something called a spirometry test, which included something called a gas transfer. Sounds exciting right? Just a walk in a maze.

The blood tests, all eight vials of the stuff was straight forward. It’s as familiar to me as cleaning behind my ears. Part of me would like to have had the chance to have caught a Sexually Transmitted Disease since my last transplant, but alas, the bald head, lack of socialising and general lack of any resemblance of physical attraction put paid to that, and still, the hospital was still required to check my blood was ‘clean’ as it were. the hospital tested my paraprotein post transplant during my last transplant, and thus, I doubt I have anything to worry about with these set of tests. My paraprotein was less than five by the way, which the doctor said was fine. I should add that when I say I do not worry about these results, what I mean is that I worry about them the least. My superstition has gone absolutely nowhere.

The blood tests, which were the third test I had done on that windy day were immediately followed by me urinating into a cup and then me leaving said cup on a shelf in a toilet. Again, I am used to peeing, so this was no great shakes. 

Before I gave away my bodily fluids, two Medically Trained People looked at my heart. As the hospital is in a state of change, the tests were not done in the same building. The echo took place in a building that resembled the set of 28 Days Later (Big Sister is there as I type and described this building as a “dump”), whilst the ECG on the other end of the refurbishment scale occurred in a room with newly painted walls and a chatty technician. In defence of the technician doing the echo, it is probably difficult to be chatty when he was required to lift up my left breast like he was opening a cat flap. Apart from that specific indignity, I could have fallen asleep whilst he pushed the ultrasound into my chest and throat. I did arrive at the hospital at 09:00hrs after all, so by 11:00hrs, I I was waning. The sleepiness was not due to me likening an echo to a massage. To be doubly clear, I did not find a stranger touching my skin relaxing. I have had an echo before, as well as an ECG, so Monday’s tests were nothing out of the ordinary.  I am surprised I have managed to write a paragraph about them.

I do find it strange that the tests Bart’s require differ from those I had to do pre Transplant Number 1.  It’s easy to assume that two hospitals in the NHS, two miles apart would approach a transplant in the same way. You would be wrong. In March, I had neither test for my heart, instead I was placed in a machine and pretended I was a human toastie.  I also had a tiresome test on my kidneys, which in the City is replaced by a simple urine sample. One thing I have not required before is a the test on my lungs, also known as the spirometry test. In My Myeloma life, my lungs have never been tested, unless you count the peak flow meter for the return of my asthma.  
On the fourth floor of the King George V Wing, I went to a reception medically entitled ‘Lung Function’ and proceeded to go through a few doors via an irate woman lacking in manners, to a funny looking machine that required me to put a peg on my nose and blow. I blew a lot. The woman overseeing the test would have made a great motivational speaker. “Keep going, keep going, you’re doing great, keep going. Wonderful.” In fact, maybe I just need her around to help me out of bed everyday… Of all the tests I have ever had, this was probably the least intrusive. Like all the tests before it on Monday, it was nothing to write home about, except it is,  because I had never had to do it before. In my days of same old, same old, it was noteworthy. Plus, having a peg on my nose whilst placing my mouth about a large cylinder was a sight to be seen. A sight to be seen. And, it beats telling you what Bruce and I got up to on the sofa yesterday, because you can be damn sure it is exactly the same as what I did last week/month/year.

  
As with everything, I now get to wait for the results to be processed and reviewed and hope that everything really is tickety boo. Something big is afoot.

EJB x

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Consent

In this world full of litigation and compensation adverts on digital TV channels, it has become ever necessary for the NHS to protect itself from being sued. For a patient, this means that before any procedure, you are required to sign a form to say you understand what is going to happen, and crucially, what could go wrong. 

In My Myeloma history, I have encountered many a consent form. Of course, when I was first introduced to them in August 2012, it did not register in my spaced out mind what they were. The second (I think) one I signed was for my kyphoplasty and I remember the fear of ‘2-3% chance of permanent paralysis’ like it was yesterday. I have consented for every round of treatment, a few of my biopsies, my two PICC lines and the two transplants since. That’s a lot of  carbon paper. At UCH, the most serious procedures come with an A3 consent form resulting in a log of thin white paper shoved into my handbag pending imaginary filing. My medical file gets the top yellow copy.

At University College Hospital, granting consent in my experience, is done on the day the treatment starts. That is not how St Bartholemew’s rolls. For on Monday, five weeks before my provisional Transplant Number 2 date, I sat down and listened to a kind Medically Trained Person reel off everything that can go wrong with the next stage of my treatment. It is not a moment I relished and one I wish I did not need to experience. I am very much in the camp of ‘just get on with it’, in other words, I want to be ignorant. I know that this is my only chance to beat this, what else do I need to know? 

A lot, apparently. 

Whilst I might not want to know percentages and other figures, other people in my life do. I suppose it is an easier way to assess the seriousness of a procedure. Although, facts and figures never truly represent all that is serious about any procedure. For example, nobody ever told me there was a chance that my previous transplants would turn me into a doubting nervous wreck. 

Prior to Monday’s appointment I was told that the recovery period of an allograft is not like that of the autograft. It is unpredictable and long, and I am likely to find this frustrating.  I was told that I will want some Graft vs Host Disease, but not a lot, and I have my fingers crossed for the rash and minor oesophageal problems type of disease, to be treated by steroids and other fun drugs. I hope the latter will bring some weight loss, but that might be negated by the steroids. I digress. After my last trip to St Bart’s, I had also asked Mamma Jones to find out what the chance of me dying from the procedure is. I wanted to know prior to today, so that I did not breakdown in tears in clear evidence that I am lying when I say that I do not care about facts and figures. Previously, I had been told that a full allograft for myeloma has a 40% mortality rate, which I think you’ll agree is rather high. Mamma Jones was told that my impending procedure has a 5% mortality rate, which is much more palatable. 

So that is what I knew from the various conversations I have had about Transplant Number 2. How was it sitting down and having somebody tell me in one go?  Exactly how I imagined.

I had to sign two different forms, one of them twice. The form I signed twice was not on carbon paper, which was disappointing because it is a material that really is a feat in engineering. Alas, I am left with a mere photocopy. 

In medical speak, I am having an Allogeneic Haematopoietic Stem Cell transplant, it says so on the first page. My donor, aka Big Sister is a 10/10 match (score!). In case you wondered, you can have a transplant at a 8/10 match. 

The aim of the procedure? Curative hopefully, but realistically, when one considers the philosophical meaning of ‘curative’, the aim can also be considered palliative. The key part, and one that I knew already, is that nobody knows which camp I am going to fall into. Right now, I am part hope, part realistic and part, I have no got a clue how I will manage my post Allo life.

The process of consent was very much a tick box exercise. Literally a tick box exercise. We, the Medically Trained Person and I, ticked the following boxes to show that I understood the possible short and long term effects. They looked like this:

SHORT TERM
• Nausea and vomiting

• Diarrhoea

• Mucositis 

• Fatigue

• Alopecia

• Immunosuppression

• Infection and Sepsis (particularly viral infection, differing from the concerns during an Auto)

• ITU admission

• Bleeding

• Transfusions

• Pulmonary dysfunction

• Haemorrhagic cystitis

• Veno-occlusive disease

• Nutrition

• Further treatments (DLI, Chemo, HSCT)
• Graft versus host disease in the form of acute skin, liver that may become chronic with affect on lifestyle 
To treat the above with steroids, I may encounter;

• Diabetes

• Myopathy

• Osteoporosis 

• Avascular necrosis 
LATE EFFECTS 
• Infertility (N/A)

• Male impotence (N/A)

• Menopause (N/A)

• Thyroid dysfunction

• Cataracts

• Lung fibrosis

• Psychological difficulties

• Secondary malignancies (aka secondary cancer)

Do not be alarmed. That’s what I tell myself. Do not be alarmed. It’s just the sort of list one will find inside a packet of Paracetamol, the difference being, having a allogeneic stem cell transplant happens less frequently then taking a paracetamol. I do not know about you, but I chow down one of those bad boys at least four times a day. An allogeneic transplant on the otherhand? Once in my lifetime (maybe).

In other words, this is just a list of everything that could happen. Let us put our hands together and say they won’t all happen. Even if some of them do happen, I have been assured that fixing cataracts is next to nothing when one considers what I have already been through.

After all this, all I know for certain is that I will be taking a lot of drugs for a while to manage whatever side effects I get as well as taking medication to help Big Sister’s cells do their thing. If they do not do their thing, I can have a top up. I did not delve any further into what would warrant this nor what it would entail.

Thus far, I have given you no figures, no percentages. I was given those and I’ll pass them on to you, but on the advice I was given on Monday, I urge you to throw them away again. Both good and bad. For if I end up being in the unlucky 70% or 5% or 50%, knowing the statistics of others, will do nothing to benefit nor influence my outcome. Get it? Good. 

• Graft failure <10%

• Cure rate 30-40%

• Acute GvHD 50-60%

• Transplant related mortality (immediate) <5%

• Risk of relapse 50%

• Chronic GvHD 50-60%

That’s it. That’s everything I was told, condensed into a blog and a four page consent form, psychological difficulties and all. Now, all I have to do is get it done. And then wait and wonder and learn. There is a great deal of learning to come. 

EJB x

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Something Old and Something New

And now to interrupt your regularly scheduled programming to bring you breaking news. Not breaking news exactly, but news of a hospital new. Not a new hospital built in the 20th century exactly, but a hospital that is new to me.* According to my friends at Wikipedia, the hospital in question was founded in 1123. For the reason I was there, thank goodness technology has progressed since then.

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Exhibit A: A building not built on 1123.

Yesterday was Wednesday 11 February and yesterday I have travelled Eastward to the place they call the City, just a stone’s throw away from the place where a lady once fed some birds, to the hospital called St. Bartholomew’s. If you are not familiar with the place, Benedict Cumberbatch seemingly jumped off the hospital’s roof in 2012.

I have been referred to St Bart’s (we’re on a first name basis now), ahead of my proposed allograft transplant. I have known for sometime now that an allograft at the place where everybody knows my name was not going to happen. I had hoped I could get transplant number 1 out of the way before I was sent to meet a new team of Medically Trained People. I like to compartmentalise, but having had to wait for two hours packed tight in a tin of elderly sardines yesterday morning, it is probably beneficial that I got it out of the way, whilst I still have hair to have pulled out in frustration.

I heart the NHS and I understand the why patients need to wait. In the cancer business, my previous sentence is called a disclaimer because I am about to bad mouth the NHS. Not all of the NHS exactly, but specifically the St Bart’s waiting areas and their waiting times. I must be rather spoilt at the Macmillan Cancer Centre, because I found two hours of the waiting too, too much as evidenced by Exhibit B.

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Exhibit B: A chair with no view

You cannot see because Mamma Jones failed to photograph what she was asked to photograph, but there were not enough seats for the amount of humans on the floor. Nor was there sufficient room for people with walking sticks to safely navigate their way around the chairs. Nor were the seats sufficiently space apart to allow any form of privacy. My biggest bugbear? Very comfortable chairs. I believe at one point I described the waiting area on the first floor of the West Wing as ‘oppressive’. I am allowed to make sweeping statements like that because I have a really bad type of cancer.

Despite my first impressions of the hospital being damaged by the aged crowds and the customary, bright coloured walls designed to bring much cheer to those affected with cancer (exhibit C), the Medically Trained People were exactly how I like my Medically Trained People to be. The people redeemed the space.

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Exhibit C

The main doctor, Mamma Jones and I spent a good hour with, was informative and spoke to me in my sort of language. I almost understood what is going to happen to me. The head of the clinic, who popped his head round the door greeted me with ‘are you who I think you are?’… Well, personally, I just love that sort of notoriety. He had me at ‘you’.

Once that appointment was complete, I was sent across to another building, in the maze that is the hospital. The building had a meagre seven floors to UCH’s 17, but that did not prevent it from having a nice view when I was finally taken through to a treatment room. I say finally, for I had to part take in a little bit more waiting in another busy and cramped waiting area. In the small treatment room, I met another Medically Trained Person who have me reading material and in return, I gave her a cup of my pee. I then went on to give somebody else six vials of my blood on the ground floor. I failed to win the phlebotomist over in our five minutes with my wit. Unfortunate.

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Exhibit D – A Room With A View

All in, my trip to the City took six hours of my life away. I will say that the two hours of medical interaction was worth all the sitting staring into space and listening to other people complain. I’m allowed to complain, but anybody else who does so is just ungrateful… Anyway, in conclusion at some point in my future St Bart’s is going to be my hospital for around 100 days. Let’s say approximately 114 days based on the collection of papers resting in my hallway. I’m going to have to get used to the waiting and I’m going to have to get used to the seats, because I have a sneaky suspicion the Medically Trained People I saw know what they were talking about.

EJB x

* Apart from the time I went to the sexual health clinic because I thought that that was a thing grown ups should do.

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The Cancer Dentist

These days I rarely learn anything new about myeloma. For preservation purposes, I tend to avoid reading about occasional medication advancements. I prefer ignorance on that subject for it does not assist my day to day. Such ignorance means that there really are few days in which I can learn or experience anything new about the wonder that is myeloma. My current treatment can quite easily be described as monotonous, and thus most days, I feel I have encountered everything this stage of My Myeloma can throw at me. Even the unpredictable delays and detours no longer surprise me. It’s an old hat. A black, old, slightly smelly, definitely frayed, hat.

On Monday of this week, as you may have guessed, I did experience something new. Be warned, this does not mean it was interesting (it was not), so feel free to skip to the end. Interesting or not, new is new, and I have been talking about it ever since. It beats me describing how I felt when I had a cannula put in on the same day, which is exactly how I felt 18 months ago and how I have felt almost every time I have had one since. There are only so many times you can spin the same tale, or else one risks becoming as monotonous as the treatment.

In case you wanted to know, the cannula on Monday stung for a few seconds as the nurse inserted the tube into my right hand. I like to use the right hand for cannulas because the left veins are sucked dry more often for blood. The sting was followed by the word I utter without fail, after a successful insertion: ‘blood’. It is a word that denotes relief that further prodding is not necessary. As soon as the tube was removed the bruise appeared and it remains still, or as I view it; the unmistakable mark of illness…. That is the end of that tale of my normality. I do love digression. I do love repetition.

Monday’s appointment came about because I have been experiencing an occasional pain in my jaw, and it was decided that the first step of investigation into the cause would be a trip to a dentist. The dentist in question, would be what I have been calling, the Cancer Dentist. No normal dentist for me. Exercising caution is key.

Did you know that having cancer treatment can make a trip to the dentist a dangerous thing to do? The reasons were explained to me, but my appointment was four days ago and many of them, especially the reasons with scientific jargon, have since left my brain. In a unspecified nutshell, there is an extra risk of infection for us types due to there always being an extra risk of infection. That is pretty standard, but for those with myeloma, the administration of bone juice adds a further complication. Although bone juice helps me elsewhere, there is a chance that if I were to have a tooth removed, it would cause more damage to my jaw and prevent recovery. I recall something being said about ‘flaking bone’. Nobody wants unwanted bone in their mouth.

Drugs do so much more to the body than you think they do. Apparently, I will have to give any dentist a full list of my medication should I decide not to be lazy and I must make sure that O give specific mention to the bone juice. I was told that I would have to mention the Zometa up to ten years after I last received it. That my friends, is an optimistic thought.

The moral of the story, if you have skipped straight to the bottom, is that when you are with cancer, take extra super duper care of your teeth. In the paraphrased words of the the Cancer Dentist, fixing problems in the mouth with everything else going on is difficult, almost dangerous. Prevention is key. Heeding her advice, and I have only been too tired to brush my teeth two times since the appointment. That, is called progress.

I told you this was an exciting blog.

I should probably mention what was wrong with my mouth huh? After finally admitting a problem when I could not wrap my jaws around a bratwurst, two appointments and an x-ray of the jaw via A&E, I got the the diagnosis. Do you know what was wrong with my jaw? Absolutely nothing. By ‘absolutely nothing’, what I mean is, nothing cancer related. I did not think that was even a possibility in this day in age. In fact, my jaw ache is something many normal people suffer from; the teeth grind. How tame. I almost feel like a wuss for one day, it even prevented me from eating a cherry tomato.

Okay, there was something else said at the appointment, something far more serious, but I fear you will judge me… I have a build up of plaque around my molars. It’s not like anybody can seem them. Worse than that, at the ripe old age of 30, I was given a lesson in how to brush my teeth.

So there you have it. It may have been new, but my oh my, was it boring.

I should add, to make this blog even longer, that even though I do not know how to brush my teeth, I have never had a filling… I do still have myeloma though.

EJB x

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The Tattoo

Have you ever woken up and wondered ‘my, what on earth does a radiotherapy tattoo looks like?’

Of course you have. We all have. For many of the fortunate masses, it is one of the great unanswered questions in life. We rarely share these thoughts with others in case they think we have some sort of fetish for untidy black blobs on human flesh. Not me, I asked to see somebody’s NHS artwork long before I can cancer. We all know, deep, deep down, when you truly think about it, that these blobs offer nothing for one to fetishise over, even if the ones you will see before you today are contained on my naked body. Sorry, I meant canvas. The marking on a person’s body is merely a permanent reminder that they have or have had cancer. Their presence is a practical one.

I have three of these tattoos. You can call them blobs if you like. I have one on each hip and another one in between the other two. It was not until I looked for one this morning that I realised how ugly they are. Thank goodness they are small and thank goodness I am round.

I am aware that your curiosity needs to be satisfied now and your wondering must come to an end…

It’s time for the reveal….

The Radiotherapy Tattoo, in my flesh.

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‘X Marks The Spot’ – this photograph was taken a day after I was inked and clearly, my body did not like this and clearly, I forgot to wash off the marker pen

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‘Blurry Eyed’ – this photograph was taken this morning, over 6 weeks since the previous photograph was taken, you can see my pyjamas in the corner of the photo

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‘To Scale With A Ranitidine’

Have a wonderful day.

EJB x

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The Reluctant Complainer

In my mind, I like to think that I am not a complainer. I imagine that I am a picture of English manners and/or passivity. I worry that when it comes to my hospital, I am not seen through my own rose tinted glasses. Sure, on the rare occasion, I may have been vocal about the delays in Daycare, but only on one occasion was I shamefully rude about said delay and I did apologise for my reaction a few days later. Telling people how much they bruised you after they have put a cannula in, isn’t exactly complaining is it? By the same token, telling a few people that a Senior Medically Trained Person has poor people skills, is merely an observation.

I am worried that I am perceived to be a complainer, because whenever my life is interrupted by delays on the 2s now, at least three people apologise to me and more often than not, one of those people is the Medically Trained Person in the fancy Blue and Red outfit. It is of course polite for them to apologise, but there were no apologies to that extent when I was on PADIMAC and my treatment could take four or five hours. And so, I fear I have an unfounded reputation for speaking my mind.

Okay, I did write three letters of complaint to my GP when I was diagnosed, but that was to my GP. I am not one to complain to the lovely people who have taken care of me and continue to take care of me so well over on Huntley Street.

I mean, there was the time I demanded to see the head nurse regarding the quality of the nursing care at the National Hospital of Neurology and Neurosurgery, but that complaint was warranted, because the care they could be bothered to provide really was dire. I followed up my concerns in the ‘other comments’ section of the UCLH survey to boot. Twice.

I really do not complaint. I try to remember the manners passed down from Mamma Jones and, let us face it, I’m very passive.

I suppose my comments to multiple Medically Trained People when I was admitted to hospital during my transplant, could be interpreted as complaints. I was pooing a river and hallucinating green giant lemmings attempting to escape from my stomach by drilling holes with wooden spoons at the time.

The care I receive truly is tremendous. Everybody is super duper nice to me. I like to think this is because I am nice and not because people have secretly badged me as the opinionated fat one with myeloma.

So, as you can see, I really do not complain. I am ever thankful for the care I receive in that wonderful building on Huntley Street. It pains me to think that others would assume anything else when it comes to my being.

That said, a month ago there was an actually an incident that did require complaint. I actually complained. To this day, I feel most guilty about it and I have not stepped foot in the section where the incident occurred since. In short, My Second Favourite Blood Taking Person, whose demeanour is usually so calm and collected, shouted and swore at me whilst directing a needle at my arm. There is more to my tale, but all I will say is that it was unprovoked. I have a witness.

I was not going to complain, not because I am not a complainer, but because I feared it would make me feel uncomfortable when I make my fortnightly journeys downstairs to the Lower Ground floor. I am inherently selfish, so I did not consider the impact had he shouted at somebody else and not me, who as you all know, is as hard as nails. I eventually realised that I already felt extremely uncomfortable about visiting the Blood Test Room because of the incident itself, and when I realised that, I wanted to tell somebody simply because it should not have happened and I should not feel this way about having to have my blood taken. It definitely should not have happened in a cancer centre. The centre is not the place to feel awkward. Just ask their decorator.

I went to a magical window called PAPs in the hospital’ Tower, where I was told that because of what I was alleging, it had to be a formal complaint. And here in lies my guilt. I feel guilty for having to complain and now I am afraid to show my face, not because I fear everybody in the Blood Test Room are now going to be intent on bruising me as much as they can, which I do, but because I am embarrassed. I am very embarrassed about it all.

I am told that I will receive an apology when I next go in, that creates more embarrassment. The thought of it makes me want to convulse in an overdramatic and unnecessary way. I do not want an apology, I want it to have never happened. My Favourite Receptionist has offered to come down with me, which is nice. Clearly, I do not know if this would make me feel more awkward.

Tomorrow, I am going to go and have my bloods done and I will have to keep reminding myself that I did not want to complain. I am not a complainer. I am a reluctant complainer who occasionally does not think before she speaks. Maybe I’ll get that on a t-shirt.

EJB x

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My Most Emotive Subject

I am as good at meeting deadlines with my blog as I am currently in my work. With that in mind, let me tell you about my Valentines Day. For those unromantic types out there, the date in question was 14 February.

In stark contrast to previous years in which I have been a single only marginally dreading the day when couples show off their lust disguised as love in a sea of red because of my own traditions, I wholeheartedly dreaded the 14 February 2014. I did not want it to happen. There was no tradition, but that was not getting me down. The 14 February was the day I had to see the Person Medically Trained in Women’s Bits. To you, this means that the 14 February was the day I got to sit down six months after my transplant to find out just what it did to my lady bits. My most emotive subject.

I know, and have known for a long time, what My Myeloma has done to my fairytale dream of living to be a granny with a house full of bric-a-brac with photos of my children and their families scattered about for all my guests to see. That is a sentence that I cannot say out loud. And thus, as the day drew closer to the appointment, my dread grew along with a fear of the words I know to be true, but did not want to be confirmed. You. Are. Infertile.

The scariest part of the appointment anxiety, as this is my most emotive subject, is that I did not know what my reaction to the news would be. I had already poorly attempted not to cry in front of the Person Medically Trained in Women’s Bits on two previous occasions, so for this appointment, I thought that mass hysteria was an inevitability. Also, the doctor is something of a cold fish, which does not assist in her delivery of bad news. So, I lined up a Maurice to attend my appointment with me, which eliminated some of my concerns in the lead up to Valentine’s Day. I also strategically arranged a counselling session on the Monday after the Friday before in order to help me deal with the aftermath.

I should be honest, the appointment was mostly arranged by the lovely haematology people because of the side effects I was experiencing as a result of my menopause and infertility, which in turn, are a result of the chemotherapy I had on 17 July. For those who are not preoccupied with my life, the side effects included horrible hot flushes, a lack of flow and other things connected to moisture. Mostly the hot flushes. Hot flushes are vile. They are also embarrassing, particularly if you are obese and trying not to adhere to a stereotype.

It took four months for the department to process my referral, despite me having already seen them twice. That is a lot of sweat. I had a month after I received the appointment date to dwell and image various scenarios in which the result was the same. A fortnight or so prior to my appointment, given the efficient administrative process, I phoned the department to ask whether they required me to have any blood tests to look at my hormone levels or whatever else they look at when they are looking at what I wanted them to look at. A nurse, I presume she was a nurse, called me back and vaguely said that if they were required, they would have been requested. I objected to this, but hey ho, I just wanted to make the most of the appointment and rip off the rather large plaster that constantly itched.

The appointment arrived and, unsurprisingly, it was no where near as bad as I had imagined. Maurice was there to hold my hand of course, which was invaluable. I described my symptoms and the Person Trained in Women’s Bits confirmed that I was going through the menopause. Some symptoms I had been suffering from that I had attributed to myeloma, were apparently, also menopausal, including a weaker bladder and aching joints in the morning. I thought these things were connected to age more generally, but no, in women, it is menopause. I am sure there must be other reasons.

For this so called menopause, I was prescribed HRT in the form of patches, which I wear everyday on my buttocks. Said patches slowly release oestrogen, which will then do a whole host of things to my body, including reintroduce a period. This news came five days after I cleared out my tampon drawer, so I was annoyed.

Then there was the hard stuff. I have less than a 5% chance of conceiving. I believe this is said to protect a Medically Trained Person’s reputation in the event of a miracle, but really it means, you are not producing any eggs. I heard her words and I did not cry. My strength during the appointment astounded me, and I suspect that that came from having somebody with me who did not mind me talking about my vaginal dryness. I even summoned the strength to ask a question Big Sister had armed me with. Can I carry a child?

The short answer is yes. I can carry somebody else’s bun in my oven. There is currently no damage to my womb. A slight flicker of hope.

The long answer is more complex. It goes something like this. Yes, I can theoretically carry a child, although I am not sure what consideration would need to be given to my lesions and whether they would veto any plans to knock me up. I would also have to lose about a third of my body weight in order to get any form of IVF; this is probably no bad thing in general and would help me in one of the points below. My womb is fine now and has not been damaged by my treatment, but if I require an allograft before I can do the above, the radiotherapy would most likely destroy any hope I have of breeding. On a more practical level, I am single and I am not getting any younger. I would have to find a man who accepts my standing and decides that he would like to spend the rest of my life with me and I have had no luck so far before the hurdle of myeloma. How would we pay for it? And then, the question that terrifies me the most, if the medicine is available to me, would it even be fair to bring a child into this world when Wikipedia tells me that the probability of me living to it’s tenth birthday is slim?

And thus my dreams hover over a flushing toilet.

For this, for all of this, I hate myeloma. I may have held myself together in that appointment, but I grieve for what I have lost, I cry for knowing at some point, I may have to make a moral judgement and for the possibility that I may never be afforded the opportunity to make that judgement.

The appointment itself was anticlimactic. Like I said at the start, I knew what was going to be said, whether I wanted to hear it or not, and I think I had managed to shed my tears in private.

It has been five weeks since my appointment and in that time, I have gone through a pack of my patches. I also got frustrated when I asked for a re-prescription from my General Practitioner and they insisted that I visit them to be thoroughly assessed because the person who specialises in all things womb, had been remiss, according to them, to have not fondled my breasts. Needless to say, I found this a ridiculous waste of time and a drain on valuable NHS resources. Of course, I failed to say this to the GP. In the six weeks, my hot flushes have lessened, my nausea has increased, 50% of the time I can sleep through the night without nature calling and yesterday, I was reacquainted with my flow. It was rather novel.

As for the other stuff, I try not to think about it at all, but living in the world, one sees babies, if they do not see them, they hear about them and on these occasions, all I can do is swallow.

EJB x

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Accident and Emergency

I lie where I am lying and I am ruing the day I boasted about having more energy than I have had in a long time. Since I did my little boast (if you cannot recall it, you can find said boast directly below this rant), I have felt unwell. Not only have I felt unwell, but yesterday I wasted an entire day’s annual leave in bed at Mamma Jones’ house wanting to punch déjà Vu in the face. Today, I missed my long awaited, first physiotherapy appointment as well as missing my meals. All these factors get me to where I am at this current moment of time, in a bed in A&E waiting to see a doctor…

To be clear, I am absolutely furious. I am furious because I do not want to feel incapacitated by my health anymore than I was at this point last week. I am furious because I have too much to do to have to spend the next few days in bed. I was maddened by these two points prior to 17:00hrs this evening, but since then, my fury has turned to red rage.

The red rage appeared because instead of giving me some antibiotics and inhalers, as I told him to do, the GP at my parent’s medical practice decided to nebulise me, make me take eight steroids and then send me to hospital. Not only was I was told to go to A&E, but I was forced to go to A&E via ambulance and via blue light’. Red Rage.

I do feel unwell. My cough sounds revolting and, in general, I look goddamn rough, but I did not, and do not feel like these factors warrant me lying in a bed in A&E. I am wheezy and last night, I had difficulty breathing, but again, that does not warrant me lying in a bed in A&E. According to the GP, I am having an acute asthma attack. According to a nurse and the paramedics, it sounds like I have a chest infection and need some antibiotics. Red Rage.

There are levels to illness and as much as this one makes me feel bad, and in need of my bed, it does not require hospital treatment. I know a different sort of illness that requires that and I am sick of that one. Speaking of which, if it were not for that illness I know all to well, I would not be here, lying in a bed in A&E. I want to be in my bed, resting.

I may have got to experience my first ambulance ride, but I feel like that journey was a complete waste of public funds when Haemo Dad could have transported me to A&E much quicker. I have other comments about the GP’s actions as an example of our overrun A&E’s but I will voice these when I am home safe and free of a fatal asthma attack, which is what the GP told me I was at risk of. The GP coincidently did not know what an autograft stem cell transplant was, so.

In the meantime, enjoy my photographic journal below.

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I’m back and the bed that I lie in is not in A&E, it is in Mamma Jones’ house and it is the morning after the night before. I thought it only appropriate for me to conclude my tale in one part, but alas, I was too tired last night to do it.

I returned home around midnight having had some oxygen (I was in no way a fan of the nose tubes, and it wasn’t just because it prevented me from sniffing EMan), an X-ray, another nebuliser and some steroids. I returned home with antibiotics, steroids and an inhaler. The surprise astounded me.

I must say, my experience yesterday, reaffirmed by views on primary care in the NHS. Unlike those views, I was most impressed by the treatment I received as soon as I got in the ambulance and thereafter. They strap you down you know.

Back to my though, I am embarrassed that the response to me having a chest infection and asthma, the latter being something that returned to me post transplant, was an ambulance and A&E. I spent most of Monday and Tuesday being absolutely frustrated that once again, my body had been brought down by a bug, something that once upon a day a lemsip or three could cure, so add an overreaction in blue light and I am at a loss.

Fortunately, and I think this one is more for others, as frustrating as I find it, as I have now experienced this chest infection/asthma cocktail once before, I knew what it was and I held my head together. I may feel blue about being unwell and letting people down because of it, but I was in no doubt of what was wrong with me yesterday. Okay, so there may have been a little fear when the GP said ‘fatal’ and I had tubes stuck to my face, but I didn’t let my mind run away with me, which is indeed progress. I held my head.

And so, today I am to rest and then tomorrow we will see. On a plus note, I did feel better when I left the hospital yesterday, so it could not have been all bad.

EJB x

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Rock Bottom

I want this to stop. I don’t want any more pain. I do not want to experience the pain I am already experiencing. I do not want to produce from my mouth and nose, anymore green vomit with egg whites. I want to be able to eat. I don’t want to have to have a green poo, if you can call it poo, on the hour every hour. I do not want to have ‘a good case of oral thrush’. I hate relying on the Angels for every little thing, which last night, included putting my bed sheets on me because I did not have the strength to do it myself. I want to be able to sleep properly. I don’t know why my skin has decided to turn a certain shade of grey, but I want it to be its normal colour. I want to be able to drink without feeling like the universe in my stomach is staging a coup. I want some energy. I really want all of this to stop and normality to return.

The thing is, it’s not going to stop, not immediately. And I have to deal with this. I am not wallowing and I am not crying. The beauty of this process, is it cannot be turned around. These feelings, and these experiences were determined last week, we just did not know how they were going to manifest themselves. We still don’t for certain. The fact that I cannot back out, means that even though I may feel weak and a scaredy cat, I am forced into a position where I have to be strong, because all this shit, literally, is going to happen anyway. This makes soldiers of everyone, regardless of whether they thought they had the strength to do it or not. Get through this and I’ll never look at somebody who complains of a cold in the same way again.

Clearly we have assistance from the troops, for me, this means going straight to the oramorph now in the constant event of pain, because nothing else will curb it. My doctor told me this morning that I have to stop trying to be brave. I would not say that trying to remain well mannered is brave. I think he was referring to the use of morphine and how long go I go without asking for further assistance (T13 déjà Vu). How bad is bad? Is this rock bottom? It looks like it. After my experience last night, which was worse than the night before, I have reconciled myself to the fact that rock bottom looks something like this, and needs several doses of oramorph, to make the future look rosy.

And so, from rock bottom, I wish you well.

EJBx

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