Please not I accidentally published this blog early because I have limited control over my fingers; this is the final version (unless I reread it during a bout of insomnia and decide to correct my typing errors).
University College London Hospital acted with the greatest of haste following my MRI and all round bad results. Not only did they make sure I was referred to Bart’s within days of our meeting, they also referred me to their Radiotherapy Department. I am not sure of the particulars or what happened behind the scenes, but I do know that I saw my Medically Trained People on Thursday 30 March and I was informed on Monday 3 April that I had an appointment at the Radiotherapy clinic on Thursday 6 at midday. Not only did I have an appointment at midday, but I also had an appointment at 14.30 to complete my pre treatment measurements. The treatment itself was to commence on Friday 7 April.
Now, I know I just threw a lot of dates at you. In a nutshell, in order to be left opened mouthed with administrative awe, you just need to know that within the week of receiving and telling me about my MRI results, the hospital had scheduled in my treatment, which was to start a mere eight days later. Things were moving fast. Need I remind you, that this was all planned in the same week I visited St Bart’s to discuss and consent to the clinical trial. The start date of which, was dependent on my radiotherapy. All of this was also within a week of being told that I had stopped responding fast enough to traditional treatments. What a mouthful.
It was to my benefit that things were moving so fast. Mercifully, it left me with little time to dwell.
Not having the time to stop meant that I was able to get myself into what I call ‘Game Mode’, without stepping into the usual self pitying pitfalls. I walked in to the Place Where A Lot of People Know My Name on Thursday 6 April, ready to go. My head was high and my lipstick was on. I know that things would have happened around me even if I was not ready to go. Mentally however, it was important to me that I felt ready for the various treatments that were soon to be thrown at me, and there was a lot to be thrown at me. After feeling like I had been hit over the head with a Le Creuset griddle pan for a week, and allowing myself to cry for most of that week, the game was on. I was ready go.
So, after all that internal fighting talk, Thursday arrived and it was time to sit down with an unknown Medically Trained Person. This was not my first time having radiotherapy; it was my third. I had previously had a one off session on my right hip in the October of 2012, and a five day session on my L1-L5 to remove a mass in August 2014. The purpose of my previous treatments, were the same as this current treatment, and that was to manage and reduce my pain.
Previously, the Radiotherapy Department came along and zapped said pains away; and it is for that reason that I was absolutely desperate to have this treatment. It shone through. My pain was worsening day by day. Even before I walked through the door into the Medically Trained Person’s office, my desperation was palpable.
During my appointment I was informed that instead of the treating just the two areas that had been ruling my life, they would be treating three. The main area requiring treatment, the area causing the majority of my pain was a ‘mass’ pressing on my C5-T5. That’s my spine by the way for anybody who thought I didn’t have a back bone. I think ‘mass’ is a nice way of saying something else, but I did not enquire further. To treat said ‘mass’, I would be receiving five zaps over five almost consecutive days. A weekend got in the way of it being truly consecutive. Anyway, so far, so good. I saw the MRI image of the ‘mass’ and I thought to myself ‘yep, that’ll do it’ as I hunched over once again and grimaced in unbearable pain, wondering if I would ever have full sensation in my left hand again.
Also requiring treatment was my left pelvis, which I knew about, but from that appointment forward, I would only be referring to it as my ileum. Simply because ileum is a great word. My ileum would be treated with a one off blast of radiation. The third area to be treated, and also with a one off blast, was my T10-L1. The doctor said that there was ‘something left over from last time’. Again, despite being in my Game Mode, I chose not to ask any further questions about this. I trust the Medically Trained People, and I was happy to leave all the science and decision making to them. I might not have known about this particular problem, but what harm can a one off blast of radiation do? The 2% chance of a secondary cancer is hardly an issue for me now.
Such was my desire for my pain to be relieved, if they were offering more, who was I to decline it? So, I fast forwarded through the list of side effects and signed yet another yellow consent form.
Downtown Abbey has a lot to answer for. Stereotypically, British people are believed to be well mannered. We also apologise a lot but that doesn’t fit into the title and narrative of this blog. On a personal note, if I was not well mannered, I would incur the wrath of Mamma Jones. Thus, I made sure that prior to my departure that I thanked the Doctor not only for seeing me, but for seeing me so quickly and in advance of making the pain disappear. It was not a one off thank you, it was an over excited, cannot believe my luck, repetive thank you. I might have even squeaked. It was the sort of thank you that could easily be described as embarrassing. I embarrassed myself and probably the doctor. I did not care. I do not have the brain power at the moment to adequately express how much I needed and wanted the radiotherapy without simply repeating myself; I really needed this treatment.
Next up, in this seemingly never ending blog, was the pre-treatment measurements. Now, I am going to assume that the majority of you have not frequented or required radiotherapy at UCLH. It’s a different world to Huntley Street’s cancer centre. It’s in the windowless basement of the main hospital and every member of staff speaks in soft dulcet tones, to match the soft colour tones of the walls. They also introduced themselves to me at such a rate that remembering their faces, let alone their names was next to impossible.
There is one word I would use to describe the staff I encountered that afternoon and that word is ‘nice’. Everybody was so nice. I said as much to them. They were all the epitome of nice.
To be measured for the radioactive zaps, these particular Medically Trained People needed to access my hips, chest and back. In order to access these places, I needed to remove my clothes and it is this circumstance in which I encountered British manners at their most uncomfortable. The episode went a little something like this:
Technician: [soft dulcet tone] Now Emma, I just need you to remove you top and your jewellery.
Technician: Actually, can you take your bra off as well? We’ll leave you alone for privacy.
Me: No problem, do you need me to take anything else off? I’ve had a lot of medical procedures so it doesn’t bother me.
Technician: Um [looks at my jeans] can you take your trousers off as well? You can keep your underwear on. We’ll give you a gown but you’ll need to keep it undone at the back.
Me: Sure, are you sure you don’t need me to take my knickers off? I truly don’t mind. After you have to have your mother take you to the toilet and bathe you at the age of 28, nothing really phases you. Well, it doesn’t phase me.
Technician: No, knickers are fine. [The three people working on me then left the room to give me the privacy they promised, something that contradicts what follows]
Me: [Now dressed in an undone medical gown, but still wearing my necklaces, which I could not remove myself due to my pain] I’m done.
[The three female technicians then come out of their office, one helps me to take off my necklaces and they ask me to lie down on the measurement contraption]
And so, I did what I was told. I lay on my back with the gown flapping at either side of me. It was not comfortable. The three technicians started to work over me and described everything they were doing to me in their dulcet tones. They kindly explained that they needed to look at my body to complete the measurements. My naked body.
As the radiotherapy was going to be on my neck, lower back and left pelvis, this translated to looking at my chest, hips and the top of my lady garden. Yes, I wrote lady garden. For information, when I relayed this story to my nieces, I referred to that area as ‘my peach’.
For my chest, I had to remove my arms from the gown which was then pulled down to reveal my less than pert breasts. After some talking and looking, they drew a cross (I found this out afterwards) on the area known as, if I were wearing my bra and standing up, my cleavage. For my lower back, they were able to use the previous tattoos.
Now, here comes the best bit. To access the necessary area of my lady garden, they very gently and apologetically pulled down my M&S black cotton briefs so they were resting just below my buttocks, and then covered my exposed front with a piece of hospital issue blue tissue. The process continued to be narrated by those dulcet tones. The purpose of the blue tissue was to protect my modesty.
So there I was, lying on the machine all but naked were it not for the hospital gown acting as a sheet, my pants hanging below my bottom, and a piece of hospital issue blue paper towel covering my genitals when one of the technicians used something wet, I assumed it was an anticeptic wipe, to clean the top of my lady garden. It was at this point that I started to hot flush. The area was inspected closely, and the tattoo I had there in 2012, unlike the ones on my hips had faded, thus requiring another tattoo.
After I had been through the machine where I had admired some animal stickers stuck to the top of the machine for children’s entertainment, the ladies returned to the room. This time round, I received one and a half new radiotherapy tattoos. I got a brand new one on my cleavage and the half belongs to the touched up one on my not-to-be-seen. Once that was done, I was done. I just needed to get up off the machine, which in my case, is always easier said than done.
I cannot get up, after lying flat on such a hard flat surface by myself. It has been four years and eight months and I still cannot do it. So, I very politely asked for assistance, which was willingly given. As I sat up, flanked either side by two strangers, the undone gown still acting as a blanket fell off exposing my breasts and my bare bottom. It was too late to protect my bottom, but I was able to cover what I unaffectionally call my Saggy Maggies by putting my arms through the sleeves of the gown. As I put my legs down and stood up, the blue paper towel that had been protecting my lady bits fell to the floor, and my pants defied gravity and stayed up despite being rolled around my upper thighs. Once up, the technicians once again left the room so I could get dressed in private.
In private? Really?
As I said early on in this tale, I am comfortable with my body enough to expose whatever parts of it the Medically Trained People need to see. I am not embarrassed by it. I understand it is something that needs to be done, and in the grand scheme of things that I have had to do since my diagnosis, getting naked does not register as remotely noteworthy.
I did, however find my experience on that Tuesday as noteworthy. In their attempts to be polite, to protect my modesty and to make me feel comfortable, the technicians achieved the opposite. Fortunately, I can see the funny side of standing all but naked except for some rolled down knickers and an undone hospital gown. It just seems strange that their approach to nudity, a very British, hush-hush approach to nudity, made me feel more exposed than if I had removed all of my clothes in the first instance.
It was an approach that ran through the entire department, despite my attempts to be visibly carefree when it came to disrobing. When I attended for my actual treatment, the room was equipped with a modesty screen for changing, which I chose not to use for anything but storing my belongings and hiding my difficulty in doing up my bra due to my failing arm. And yet, I still went through the same convoluted format. I was not asked to remove all my clothes right away, I was asked to remove them one by one. When it came to zapping my ileum, once again, I was asked to keep my knickers on only for them to be rolled down, at which point my nether regions became reacquainted with a piece of the hospital issue blue paper towel.
I found this episode to be embarrassing too, not because I was naked but because I had a hot flush during the procedure. I hot flush all the time, but hot flushing whilst somebody I do not know is helping me off a flat surface wearing nothing but pants rolled down to my thighs with a hospital gown round my midriff is an uncomfortable experience. It is exceptionally uncomfortable when several seconds after standing, a damp piece of hospital issue blue paper towel falls to the floor. At least I made my nieces laugh. And my friends.
And with that, this particular lesson ends.