Category Archives: Macmillan Cancer Centre

The Thursday Clinic Appointment

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.

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The Regimen

When it comes to the hospital and my appointments at the hospital, I am a creature of habit. It’s comforting for me to know exactly what I am going to do when I get to the hospital, know exactly who I am going to see and where I am going to sit. UCH’s Haematology Department has long facilitated my need for routine. I come in, I bypass the accepted booking in procedures, I go to the fourth or second floor, via the lower ground floor and I am done. Along the way, I will come across several faces who have seen mine before and are kind to it. I am made to feel special and that my pals, is because I am.

Today at the Cancer Centre, otherwise known as my office, I was in a state of flux. My routine had been altered. I was not being seen by anybody on the second or fourth floor. I was forced, forced I tell you, to check in with all the other mortals on the ground floor on self service machine. On a machine! Instead of just disappearing to a place where people can identify my clinic by my face, I had to wait on the ground floor for my name to appear on multiple large tv screens. I think I have only done this once before. Not one to voluntarily fade into the background, I decided that the best way to wait for my non-Haematology appointment was to tell anybody who knows me that I did not know what I was doing. It was not a lie as such, because I did not quite know how the clinic works, but I will put my hands up and say that I was being a little needy.

I chose not to wait for my name to appear and instead asked a volunteer to inform me of the event, so that I could sit in the air conditioned abyss that is Macmillan Support. I did not ask just the one volunteer either, I asked at least three people to tell me when my name appeared in lights. I think, I was excited about the appointment ahead of me. As it turned out, the preparation I felt was necessary, was in fact, unnecessary. The appointment system at the centre, which I chose to never follow, is rather slick, and I was sent a text message informing me that I needed to visit the first floor.

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Technology is just a wonder

I will be honest, I did not like the first floor. The flooring was loud, and the other patients felt the need to monopolise the seats and bash me when they walked passed. It’s okay though, I gave them all the eye and took a photograph of the artwork. Also, and most crucially, the staff on the floor did not give me the recognition I usually attract. Again, with the special. I am special.

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Trust me, this was not age appropriate

Fortunately for me, when the time came for my actual appointment, a mere 30 minutes after the initial appointment time, I got that special treatment I demand and expect. The Medically Trained Person, who specialises in radiotherapy introduced himself and said that we had not met. I was unsure about this statement, but he confidently told me that if he had met me, he would have remembered. Obviously, this made sense to me and I took him at his word.

After five minutes, it was clear to me that stepping outside my myeloma comfort zone pays off sometimes. It has taken several weeks of talking to the People Trained in Myeloma to get a referral for radiotherapy. It has been a subject that has never been far from my mind since I heard the word ‘relapse’. Even today, I feared that the appointment was just a referral and I would be told that radiotherapy would not achieve anything. I just wanted a chance, something is better than nothing has been my motto. It looks like the Medically Trained People agreed, for my appointment was simply designed for me to sign a consent form. Radiotherapy is a go. I repeat, it is a go.

I have every hope that it will pay off, for it has been confirmed that in two-three weeks time I will be having five sessions of radiotherapy on my lumbar region. I simply cannot wait. I had radiotherapy on 22 October 2012, and I have not been bothered by my hip since. Sure, I’ll have to spend five days in the Radiotherapy Department, where if memory serves, one is spoken to with a constant head tilt, but if this means that my pain reduces by a fraction, it’ll be well worth it. In fact, I would go as far as to say that it would mean a great deal to me. If successful, it may even permit an uninterrupted night’s sleep. I am a simple girl with simple needs.

I have had radiotherapy before, but I do not feel the need then was a great as it is now. As a bonus, I was informed by the Medically Trained a Person that not only was he going to fix some of my damaged bones, a side effect of doing so may be loose stools. Score. 💩

And now all I have to do is wait… Trust me, I will no doubt have a thing or two to say about having treatment in the big tower, where nobody knows my name, but if it means I can walk just that little bit more, then hell, let’s change up the routine. Just this once.

EJB x

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Cilit Bang – User Survey Spring 2014

Today is a Friday and thus there is 50/50 chance of today being a Velcade Day. Velcade Day always promises to be eventful and by eventful, what I actually mean is a day that features waiting, a short sharp scratch or three and fatigue. The following fortnight between the next Velcade Day will feature fatigue, pins and needles, dead limbs and an attempt at living.

Today was a Velcade Day. I awoke with great enthusiasm at receiving what will now be my 51st injection of the magic bleach. Alas, that did not happen. My Velcade has been postponed due to an increase in the side effects from it, which as I have said before feels like I have rubbed my hands and fingers in fibreglass. Occasionally, it feels like I am shooting lighting bolts from my toes whilst something simultaneously attempts to remove my toe nails. More often, my limbs will go dead after a short period of rest. Since my last injection, I have also noticed an increase in me dropping things. I need little assistance in being clumsy. Last week, whilst reaching for some toilet roll for reasons that are obvious, I dropped the roll and recreated an advert for Andrex minus the Labrador puppy.

So, yes, no Velcade for me today. Instead, I get to wait a fortnight to see if things improve and the Medically Trained People will then decide what to do next. I suspect, I will continue on the disinfectant, but it will be more like a dose of Detol kitchen cleaner than the full Cilit Bang.

Recent events create a mass of questions in my head about the future and length of my remission. It is further complicated by the fact that I was told a fortnight ago that my treatment would come to an end in five more injections. The week before that I was told my treatment was indefinite and today I was told the same thing. In my life, I value consistency and people not getting my hopes up.

On the subject of consistency, as much as I appreciate everything the Medically Trained People do in the wonder of 60 Huntley Street, the timely administration of my Velcade is an annoyance. In the last 10 weeks, only one of the six appointments have gone ahead without some sort of glitch. The most popular cause of delay is due to the Pharmacy not making the big juice in advance of my arrival. The same thing happened today, it was then made by the people in white jackets, to then find out that I would not have it. Ever the cautious tax payer, I hope it now does not go to waste. Maybe that is their argument for not making it before I get there, but I am a busy woman. I do not want a two and a half hour appointment for something that can take thirty. I value my employment.

Right, I think that just about covers where we are with my treatment. But before you jump out of your socks, ecstatic that I will no longer get my Velcade fatigue on Sunday and Monday, I did still have the bone juice today. The bone juice, as much as they say it should not, has sent me to bed. And thus, the normal Velcade Day feeling resumes.

I have got that Friday feeling. I think it feels different to yours.

EJB x

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Special

I have always known that I am one to stand out from the crowd, if said crowd were located on a catwalk. I have always known that I am special, even when I pretend I am
not and that was true long before I had myeloma. I am clearly always looking for evidence to prove that I am both right and special, in case somebody was ever to call me into question. Such evidence also feeds both my confidence and my ego, so I am eager to discover it no matter how tenuous the link.

So imagine my delight on Tuesday when I looked at the treatment board to find that I was special and I was standing out from the crowd. I was so happy about it, I took a photo.

.

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Proof

Of course, one could say that the reason my name was singled out was nothing to do with me being special. They might simply say that I was the last person to be treated by that section in Daycare on Tuesday afternoon. If they were being accurate, they would say that I was not the last person booked in on Tuesday. I had the last time slot of the day, but that does not mean that I was the only one to arrive at 15:00hrs. I probably was not the only person to wait 75 minutes to be seen by anybody either; it was very busy after all and that meant I had to sit in the greenhouse on an uncomfortable chair again (seriously guests of patients, give up your seat to patients, it is not hard). I was however, the only person on Tuesday afternoon not to have had their Velcade waiting for them . Not only was my medicine not ready for me, it had not been made. The discovery at 16:20hrs, meant that I had to wait for another hour whilst the pharmacy worked their magic. It was an unfortunate fact, especially as my attendance had been confirmed just 24 hours earlier. I did remain remarkably philosophical about the three hour treatment time and I used said time productively, for which I am sure my employers are most grateful. Back to my first point, as I am not the only person to have been delayed in this way, you could argue then, that I was not and am not special.

It’s a tough call. >

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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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The Creature of Habit

I am a creature of habit. Things need to be just so. I do not like change. I sleep on the same side if the bed, I prefer a side of the bus and I always sit to the lefthand side of NFT1 at the BFI. I like things the way they are, and that is that. My treatment on the Second Floor is no exception to this. I have a side of the room, I have rituals that I adhere to, and when that changes, well, I do not manage it very well. I think I can evidence this….

I am sulking. Big time. For the Second Floor has failed to meet my usual, completely realistic, expectations.

First of all, I was greeted by a receptionist who did not know me. What? I hear you say. Not know me? She won’t last long. And none of the nurses are smiling, even when I red lipstick smile at them.

As the lift doors opened, I looked forward and saw that the clinic is rammed. Utterly full of sick people and their healthy buddies. My heart sank. There are people everywhere; it’s like there is a sale on and everybody is buying. It gets worse, I sadly discovered on my arrival that there are NO big read comfy seats free. Not only that, there are no free moderately less comfortably grey reclining chairs. To take this trip even further into the rubbish dump, there are no free hard red chairs with a tall back. I am sitting on something that I did not even know was a seat. Essentially, I am sitting on a cushioned park bench in shades of grey and orange. I am in dire straits. Actually, it is not just me, I just witnessed the Medically Trained People wheel a patient into a bay on office chair. Oh my gods, it’s all the fault of immigration to be sure.

Now, I must, begrudgingly give people their dues, I have surveyed the floor and the people preventing me from being comfortable who are occupying the the big red chairs and the grey recliners are patients. The people occupying the premium economy seats, with neck support, are not patients. They are with patients. I do mean to sound like a child when I say that they are selfish numskulls. Sure it’s New Year’s Eve and people are off work, so they have chosen to spend their free time with a loved one who is being injected with poison, but this does not make it acceptable for them to make me feel uncomfortable by them occupying my preferred seats I have back issues. Nor is it acceptable for them to watch me struggle with a chair whilst they sit their and sip their coffees, and accumulate rubbish which they seem to be incapable of putting in one of the several bins provided. I just know they have used the patient toilets. They are also making a lot of noise, thus drowning out my iPod, foul excuses of human beings. I’m am sure they are all talking utter tripe that is about as interesting as watching beige paint dry, but that does not mean that they can use up all the tables and make me put my tea on the floor.

Sod sulking, I’m irate. This is my space and this is my time and I am surrounded by badly dressed, ageist imbeciles.

Damn you, sick people. Damn you.

Smiley face.

EJB x

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27 Minutes, Minus 2

OMGeezus!

My trip to UCLH a fortnight ago was not a miracle, an exception to the rule, something stranger than fiction. Today, two whole weeks on, I was in, bled, injected and out in 25 minutes, well in would have been 25 minutes if I had not faffed around with wanting to speak to my CNS, to curb a serious bout of paranoia.

I cannot handle this change. 25 minutes does not afford me time to win over the people sitting next to me with my wit, it does not give me time to eavesdrop on the Medically Trained People’s conversations and it certainly does not allow me sufficient time to appreciate the new Doctor’s broad shoulders. It’s not even enough time to drink a cup of tea.

Change is difficult. Change is tough. Change does have to be managed. That is why, 40 minutes later, I am still in the building, finishing my cup of tea, looking at people walking by and fabricating conversations with the people next to me. Plus, in the Support section, they are playing some banging Christmas tunes. Bonus.

EJB x

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Twenty Seven Minutes

Stop what you are doing and open your mouths…. Daycare has managed to get my blood tested, obs done and velcade injected in a record time of 27 minutes. What have you achieved in 27 minutes today? Probably not what the Macmillan Cancer Centre has. That is correct, they did the deed in 27 whole minutes. Twenty seven minutes. It’s a record, it has to be. I was in and out of the building in 32 minutes. That is a world record.

Congratulations to the second floor, you clever Medically Trained People, you. After 41 injections, I never thought I would see the day, when I saw an Elephant fly. I barely had time to enjoy my big red chair.

It really is a new dawn… Well, until next fortnight at least.

Twenty seven minutes. I’m still shaking my head in disbelief, a massive, eleven minutes later.

EJB x

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Something Old, Something New

I am not one who always embraces change. I like to feel safe and familiar, though I also like progression, and that is why I am never pleased. Today, I am faced with something that is both familiar and new, and I cannot distinguish whether the distribution is correct.

Some people may think this is strange, but whenever I am confronted with a room that is decorated in red and off whites, full of people in uniforms who know who I am, sitting on a big red chair, waiting for thirty minutes and counting, I feel safe. I feel safe even though only unpleasant things happen here. The sight of my electronics resting on a red footstool is rather comforting, even if I am annoyed with myself for forgetting to bring my phone charger with me. In fact, one would be forgiven, as I sit here sipping on my Costa tea, which has a hint of cardboard about it, that absolutely nothing has changed since I was last in the big red chair, that everybody knows is my favourite. Have I mentioned this before?

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Life has of course changed, since I was last in the hot seat. This has changed. I will not allow myself to think that this is exactly the same as the 40 times I have been here before. It is different. I am making it different. I cannot feel like I have not moved on since I first came here for Velcade on 1 September 2012.

This is a new chapter.

I am not having Velcade to reach a certain point or a target, there is no transplant at the end of this round of treatment, particularly because this is not part of a cycle, and it is not a set of treatment, this is something that I am going to have indefinitely, every fortnight, to hold something off for as long as possible and keep me in the myeloma definition of a word of which we do not speak. That is what makes the here and now different.

I may still be sitting in the red chair, chatting utter gibberish to the Medically Trained People because I am suffering from the fatigue today, occasionally looking at the borderline attractive doctors, whilst writing a blog on my iPad, but this is different. They’ve changed the wifi user name for goodness sake!

I know what you are thinking, there is a part of this story that is missing. Why have I been sitting on the second floor of the Macmillan Cancer Centre for 80 minutes now, waiting for an injection of Cilit Bang? Why have I just had to fill out two questionnaires about numbness and my poo?

The answer is simple, because I have to. It’s the pay off the likes of me have to make when the disease they have is not currently active. I think.

So, it may walk like a duck and quack like a duck, but in this particularly case, it is definitely not a duck. I’m a mother effing swan.

EJB x

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Unnecessary Panic

I have made and continue to make no secret of the fact that when it comes to my monthly doctor’s appointments, there is a heightened sense of panic about my aura. I used to call it Bad News Wednesday, until try moved my appointments to Thursday.

Today, is a Thursday and I was not panicking about my appointment. It was a non appointment, just a check up before my biopsy and The Decision. The only thing extraordinary about my appointment was the fact that it was earlier than I would have liked at 10:00hrs (to accommodate the festival obviously). I even showered before Housemate left for work this morning. Extraordinary.

Everything about my arrival to the Clinic was normal. I was late. I did not get my favourite blood taking people, even though I crossed my fingers and I had to sit next to people much older than me, with at least two of who where incredibly hard of hearing with weak bladders. A Senior Medical Person even asked A Not As Senior Medical Person for assistance is a less than subtle way, which I suppose was acceptable because the patient in question was deaf. Oh and the clinic was running later than me. I was calm.

My tranquility was interrupted however when a medical person greeted me with these fear inducing, palpitation producing words:

“I thought your mum was coming today?”

And why oh why did she need to come? That appointment is a month away? What they hell were they going to tell me? What’s going on? This is it. Bugger. Bugger. Codswallop.

And then I got to wait another half an hour before I got my answers…. Thirty long minutes, during which I pondered over sending several frantic text messages, to prepare people for the worst. I inhaled the stale cigarettes and alcohol smell stuck in the denim on denim outfit worn by the man on the more comfortable seat to my left. I started to sweat. I listened to commercial hip hop and pretended, internally, that I was Miley Cyrus. I waited. I was anxious. I braced myself…

And, after all that, I need to prepare myself for the likelihood that I will be having more treatment come November. It will probably be Velcade alone. I anticipated this. Phew. It’s not the miracle, it’s not the long awaited end to this volume, I’m beginning to think that will not happen, but it is doable. I do not think a full course of treatment would be.

That was it. A whole lotta something over nothing. Funny thing though, my relief was and is bittersweet…. Always bittersweet.

In other news, my hot flushes cannot be treated by haematology, which means that I will be having more hot flushes. Great. Zometa continues to be forbidden. Great.

EJB x

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