Every four weeks, I make my way with much trepidation to the Macmillan Cancer Centre on a Thursday morning for my myeloma clinic appointment. I doubt there will ever be such an appointment now, even if the lapse between them lengthens, when I do not experience some level of apprehension.
My unease is always somewhat lessened by the routine that exists when I finally arrive in the big glass building. In spite of the anxiety, these trips almost always exist on the duller side of dull. And that is a dullness that needs to be shared! Yesterday then, the routine went a little something like this:
07:45hrs:
Housemate woke me up like he does almost every weekday morning since I was diagnosed and reminded me that I had to get up for my appointment. The appointment, was at 10:50hrs. I got up half an hour later. It was difficult.
10:10hrs – Transport
I left the flat via the cheap means of travel that is the taxi ten minutes later than I had planned. Unfortunately, this is very normal for me. I was impressed that it was only ten minutes. I applied the lipstick in my hallway before I left. I also grabbed the full sharps box I had placed by the front door the night before, with the hope that I would remember to replace it with an empty one at some point whilst at the centre.
10:45hrs – Bloods
I arrived at the hospital, where I immediately made my way downstairs to the lower ground floor to have blood removed from my arm. I still continue to lack the confidence in being able to safely make my way down the stairs, so I got the lift. Laziness has nothing to do with this decision whatsoever, yet, embarrassment that this can be perceived as laziness always exists when I turn right away from the stairs towards the lift.
For late on a Thursday morning, I was surprised to see only three people in front of me in the queue. I was number 22 by the way. I would have preferred number 24, but I did not have the time to wait for two other people to go ahead of me. The receptionist on the phlebotomy reception always refers to me as ‘Myeloma’. I imagine that this is something he does to all frequent myeloma patients because our blood forms are in one pile, and he is does not hurl it at me as a form of an insult. I will not lie, I kind of like it. And you know, he might not do it to all the patients, so I can momentarily pretend that I am special or just memorable. As always, I made some light, wise cracking conversation about my weak veins the minute the tourniquet was placed on the top of my left arm.
11:05hrs – The Waiting
Yesterday, I skipped purchasing a cup of tea and instead headed straight up to the fourth floor for my appointment. I sensed that being 15 minutes late for my appointment was acceptable but 20 minutes was not. Plus, I really am not a fan of the Tetley tea.
First things first, I had to check in. I checked in and then the nursing assistant did what she does to me every month, which is something that is known as pure torture. She weighed me. Thank goodness I managed to do something, adding to my late departure earlier in the morning. As soon as I stood off the scales I got a bottle of water out of my bag and started drinking it to make sure I had the goods for my pregnancy test.
Myeloma patients are required to wait on a set of chairs in a corridor on a Thursday due to the transplant patients in the actual waiting area. In that corridor, there were five people waiting, all of whom could not raise a smile. At least, they did not in the 25 minutes I sat there. It’s a depressing wait. Nobody talks, even the ones accompanied by other people. One man who I sat next to at first, but he quickly moved one seat away from me spilt a drink on his trousers. I offered him a tissue and he just shook his head without making a sound. I smiled, he did not. I deduced that they suffer from the same apprehension that I do, they just prefer not to shout about it. So, I just sat and continued hydrating myself.
A sixth patient made an appearance, one who I had seen downstairs but failed, maybe on purpose, to make contact with. We were on a PADIMAC together and despite him being a friendly sort of chap, our conversations would occasional upset me. I suffer greatly from myeloma treatment envy and on that particular course of treatment, I had the envy. Anyway, he said he missed me and had been trying to find out how I was. He could not wait to get home and tell his wife about my curly hair. The conversation made me feel a slight twang of guilt about my behaviour on the lower ground floor when I first saw him.
11:30hrs – My Appointment
Shockingly, my wait was incredibly brief yesterday, something that I could not help but vocalise. The Medically Trained Person called my name, she had not seen me for two months, and I was pleased that she immediately noticed my movement was less strained then it was when we last met. I believe she said that I was “positively speedy”. As I continue to be in pain everyday, it is very difficult for me to notice any improvements in my mobility. I do not think my memory works that way. She saw it, at least, I hope improvement is what she saw.
In these appointments, I tend to just tell them what has happened to me in the four weeks since my last one. I had a lot to say, but had a CNS been in with me, they would have known it already, for I feel like I have been overly needy since my radiotherapy finished. I mentioned A&E, the vomiting and nausea, the diarrhoea and the increased fatigue over my last week. We also discussed my forthcoming holiday and the need for me to be cautious. I said that with Mamma Jones, I would have no option to be anything but cautious.
The Medical Trained Person told me that at my last paraprotein test, taken on 28 August, my paraprotein had fallen to 16. The folks at UCLH continue to be pleased with my progress. Myeloma treatment is not that simple, and what followed was a conversation about my low neutrophils and what would happen to my medication if they continued to be low. Unfortunately, my Full Blood Count results had not been returned and I was sent off to see the pharmacist to collect my pile of drugs.
En route, I had to interrupt a conversation a Medical Trained Person was having with another patient to say that I had to do my pregnancy test. As she said, it could have been something of a Carry On moment. The urine sample I did, not without spilling it all over my hands and the floor. It happens every single month.
12:00hrs – The Pharmacist
My visit to the pharmacist normally lasts no longer than 10 minutes; not yesterday. My FCB was back and my neutrophil count had fallen further to 0.47, and my white blood count to 1.38. As a lot of you do not need to know what this means, it is very low and the WBC result definitely explains my recent increased fatigue. And so, I had to wait as the pharmacist went to ask for some further educated advice. Any anxiety that had gone when I left my previous appointment quickly returned as I sat in that room by myself.
The decision was made that for one cycle, I would be given a cyclophosphamide reprieve and the Revlimid dose has been halved. Apparently, my body needs to a wee break from the drugs. I see positives and negatives in this latest drug development. To help the infection magnet that is my body, my G-CSF injections have also been upped from one a week to two. I now have to return to the hospital on Monday to have my bloods done again. I hope that these bloods will not stop me from getting on a plane next Wednesday.
12:40hrs – The Dispensary
I was done, and in possession of a lot of publicly funded medications bar my morphine. So, I made my way back down to the ground floor to collect the controlled substance from the dispensary. It was not ready. I was not surprised.
12:45hrs – Macmillan Cancer Support
I took it upon myself to pop into the Macmillan Support Centre to have a brief chat with my favourite ladies. I think they needed to know that I had an uncontrollable desire for sushi followed by a rare steak followed by raw cake batter. I was told that given the current 0.47, such a meal would be unwise. As if I needed to be told that.
To avoid getting angry at the snails pace of the dispensary, I spent the next hour catching up with a friend over a cup of tea. I then ran a few errands on the worse road in London Town.
14:30hrs – The Dispensary
I returned confident that my MST would be ready to collect. By this point, having been on my feet for more four hours, I was more than ready to go home. I handed in my ticket and after ten minutes of the gentleman trying to find it and telling me it was not there, and me reassuring him that it was, another person told him that it was in the floor, a mere 5 metres from where I stood. I was not pleased, nor were the six people behind me waiting to collect their drugs. I handed over my driving license and signed the form to say it was for my personal use. I must not forget that immediately before that I put pen to paper, I had to confirm that I was not allergic to any drugs and I had taken MST before. 772 days before in fact.
15:10hrs – Home
I opened the door and made my way immediately to the sofa where I stayed until 20:00hrs, at which point, I dragged myself off to bed.
So, you think all of this sounded monotonous? You can only imagine the thoughts and discussions I omitted from the experience for your pleasure. Well, just think, I get to do it all over again in four weeks time. And the four weeks after that and most probably, the four weeks after that.
This is my life.
EJB x
P.S. I remembered to replace the sharps box.
