Tag Archives: UCH

It’s Only Da ‘Roids

steroid
noun BIOCHEMISTRY 
Any large class of organic compounds with a characteristic molecular structure containing four rings of carbon atoms (three six-membered and one five). They include many hormones, alkaloids and vitamins.

Say what?
The above, I imagine after choosing a life of easy culture and civil service instead of biochemistry, is a fairly crude definition of a steroid. I do not know the molecular compounds of steroids. Why would I? Nor do I know the specifics of the steroid I have come to loathe called Dexamethasone. All I know is that the above description of a steroid fails, quite dramatically to encompass the sheer power of a drug I have been taking on and off for five years, and for that whole period of time, has been routinely been kicking me in the guts. 
Forget about the mood swings it creates, the changes to my body in the form of weight gain and facial hair have hardly made me a catch. I think the Myeloma already put paid to the romance, but the steroid beard certainly helped irradiate any of my sexual allure. You should have seen my steroid beard yesterday. It was particularly impressive yesterday because it lay in a bed of brace induced dry skin.
My quick Google search makes them sound so innocent. I know some steroids are innocent, but ever since I watched an episode of California Dreamin’ where Tiffany became addicted to steroids to enhance her volleyball performance, I have known there are something to be wary of. And wary I have been. 
Of Dexamethasone, the Internet describes it as a medicine and ‘a synthetic drug of corticosteroids type, used especially as an anti-inflammatory agent’. I’m not going to begin to understand what that means, but I will say that previous experience has proven that it is a remarkably good ‘anti-inflammatory agent’. 

Whilst we are on the subject of uses, I do not know, as this blog should clearly indicate, why I take this drug so routinely. Every Myeloma treatment is supported by steroids. Every treatment. I think I understand why I am talking it now, but why Dexamethasone supports pretty much all the myeloma treatment I have ever been on, the reason is anybody’s time to research. In light of my ignorance, I thought the least I could do was to investigate the list of known side effects. If you had asked me what these were two months ago, I would have answered without hesitation. Now? Since I started my new regimen however, the steroids have me feeling all out of kilter.
For the last three-four weeks, it would be fair to say that I do not recognise myself whilst on Dexamethasone. It should currently be called the ‘I’m Sorry’ drug, because I constantly seem to be apologising as a result of my behaviour whilst on them.
According to Wikipedia the side effects of Dexamethasome can include acne, insnomnia, vertigo, increased appetite, weight gain, impaired skin healing, depression, euphoria, hypertension, increased risk of infection, raised intraocular pressure, vomiting, dsyspepsia, confusion, amnesia, irritability, nausea, malaise, headaches and cataract. So, nothing big then?
In five years, I can say without hesitation that steroids are hard on the body. I have personally experienced at least nine of the listed side effects. They have always been hard on my body. Wikipedia’s list failed to list my once biggest problem with the stuff and that’s the fatigue. The inevitable crash after the fall. And it was always inevitable until I started my current treatment. Gone are the three days of sleep after taking a dose. I suppose I should be thankful for that at least. Unfortunately, they still leave my mouth tasting like gone off milk stored for 100 years in a rusty tin can. For me, this means I can’t drink water because it just extends the taste of rotten milk tin.
Why on earth are you telling us all of this, Emma?
Since I started taking it again, my relationship with Dex has changed, and the difference this has made in me is significant. It feels personality altering. 
I really did think I knew how to handle taking my steroids. If it made me stay up all night, I would stay up all night. Beards can be waxed or threaded. Crashes can be slept through with a bit of help from Julie Andrews.
Fast forward to now, and my reaction to the steroids feels extraordinarily different. Gone are the sleepless night. Gone is the excessive hunger. In, well, in is uncontrollable anger and tears. Lots and lots of them at the click of a finger.
Approximately 80mg of Dexamethasone a week, is making me into a quivering, worrying mess. I believe I was once stoic, but at the moment, I cry daily. I may cry when I am taken out of my brace because I irrationally worry that something will go wrong. I cry when I get out of the brace because it’s a restrictive torture device, and I do not wish to be restricted anymore. I cry on other occasions too; I cry because I fear the brace is not going to work and I’m terrified of having to wear it for longer than the six weeks I have remaining. I cry because the brace makes me feel lonely and I probably cry because I worry I am going to die. 
To be honest, given how alien my current circumstances are, I do not think I need a reason to cry. I just know that it is happening far too easily, far too often and the fault lies with the steroids. I can feel the anger and the pain boil up inside me, and nothing, and I mean nothing is going to stop me once it starts.
Uncontrollable tears isn’t my only new side effect, for the first time in five years, I can honestly say that I have now seen ‘roid rage. I am so quick to anger, there are times when I just want to scream and break things. There are times when I imagine myself breaking everything I own. There is no rhyme or reason to it, except, I expect, the steroids are bringing out all the anger I have about my current situation.
Just last week, I shocked myself with my behaviour twice whilst in the hospital. The first time I saw red was when I was stuck in bed desperate for the toilet, without my brace to mobilise. To paint the clearest picture, this scenario is my worst nightmare. You’d never catch me using a She-wee or peeing out doors; I’m just not that kind of girl. I have never been a public pee-er nor am I a good bed pan candidate due to the need sit on it with my crooked spin, big bum knowing that I have no privacy in a hospital bedroom. 
So there I was, in bed with a full bladder, in agony, asking some Medically Trained People for help. For anything that did not involve peeing in or near my bed. They clearly did not understand me, because they suggested a ‘pad’, which turned out to be a giant nappy. I can and did humiliate myself in several ways in hospital, but a nappy was pushing it too far. Way too far. 
My response to the nappy went something like this “I ask you for help and you bring me a fucking nappy? A nappy? I’m 33 years old, did you not consider how that would make me feel?” I was met with silence and blank faces, so through my tears, I went on. “If anybody would have been bothered to read my notes this morning you would have known that I should have been braced and allowed to go to the toilet at 7.30am, but it’s just typical of this ward that this did not happen. Get the fuck out of my room. Get the fuck out of my room and take the fucking nappies with you.”
And then I wet the bed. 
I apologised a lot that day. I am many things, but somebody who talks to Medically Trained People (or any people) like that, is not me. I was utterly ashamed of myself, but I could not stop myself either.
A few nights later, I had done some quality time in my brace. By ‘quality’, I mean at last 12 hours. By 21.30hrs, I had decided it was time to get into my bed and time for my breakthrough pain relief, so I pressed my bell. A nursing assistant attended, turned off my alarm and told me my nurse was busy. I waited 20 minutes, and I pressed the button again. The same thing happened again, but this time I explained the level of pain I was in. 30 minutes later, there was still not sign of my nurse and once again my alarm was turned off. By 22.45hrs, I was in so much pain and felt so completely helpless, I opened my bedroom door and slammed it. The satisfaction I gained from slamming the door was so great, I did it again. And then again. And yet still nobody came. After some more bell ringing and door slamming, at 23.30hrs, I finally came face to face with a nurse. Obviously, she was not my nurse and couldn’t help me, but she was a nurse who told me I could not possibly have been ringing my bell for two hours. I corrected her.
A few minutes later, I met my nurse for the night, who explained that she had been with a ‘poorly patient’. That was it for me, if it suited the situation, I would have gone back to slamming the door, but instead I told her that by telling me she had been with a poorly patient, she made me feel like I was insignificant and my illness was a mere annoyance in comparison. She then started talking to me in a very soft voice, to which I responded “where in my notes does it say I had a lobotomy or that I am stupid? Please do not talk to me that way”. 
So… I had to apologise again in the morning. My little outbursts become so frequent that I was regularly being visit by the Sisters to talk through my ‘issues’. Steroids were my issues.
I thought my episodes may have died down once discharged and in the comfort of my home. I was wrong. I’m still very quick to snap and I am convinced people are not listening to me or at least they don’t understand me, which is just as likely to get me to clench my fist.
A few nights ago, I was frustrated that I could not sleep and I suppose, being trapped in a bed did not help the situation either. So, like any other sane person on steroids, I used my grabber to pick all the DVDs (yes I still have DVDs) off a shelf above my bed and then once I had them, I threw them as hard as I could across my room whilst screaming and crying. I don’t know what had made me so angry (well I do, it was the steroids) in that moment, all I knew was I had to throw and scream as much as I could because that was the only thing that was going to make me feel any better. I suppose it’s better than resorting to physical violence, not that I am a particularly worthy opponent at the moment. In the end, I woke up Mamma Jones and she had to come and calm me down. 
I have listed some pretty shameful behaviour, behaviour that far outweighs the late night steroid induced internet shopping of old. In my current state, there does not have to be a catalyst to one of my fits. Yesterday, I just cried because I was scared. My point is, I am constantly trying to decipher what is a true emotion and what is a steroid emotion. My fear is that the two are interlinked and for the moment, I can only show my frustrations through the steroids.
It makes me want to avoid people. I snapped at Housemate last week because I felt he was not listening to me. My ‘roid rage scares me. I need friends when I get out of this brace, otherwise I could have saved £500 off my prepaid funeral. To be clear, I need friends for more than just filling seats at my funeral. I just fear that my current state will drive people away, even if it’s caused by the steroids.
It feels relentless. 
I’m not jovial. I’m not even sure when the last time I laughed was, although the brace can be blamed for that. It restricts my mouth.
EJBx
P.S. I cannot think of steroids without thinking of the sign my friend made for me all the way back in 2012, that states ‘It’ Only Da ‘Roids’. She’s literate by the way, I think the use of ‘da’ was designed to make me smile. It’s a thought I hold close. Through tears, shouting, late night shopping and whatever else it throws at me; steroids are not my controller. 
Myeloma is. I’m just not entirely sure how that helps me right now…

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Bon Anniversaire – A Side Note 

There is an app I have on my mobile telephone, which I like to call The-Most-Depressing-App-In-My-Phone-That-I-Cannot-Bring-Myself-To-Delete-Because-I-Am-A-Tortured-Soul. Perhaps I like being reminded of my years of good health, or perhaps I really am a tortured soul.

Not that I could ever forget the  importance of today’s date, but said app would make it next to impossible for me to forget My Myeloma diagnosis even if I wanted to. For the last few months, let’s say thrice weekly, the App in question has been reminding me of the quick deterioration of my body over the Summer of 2012. 

Whether in the form of several photographs of just my legs on my bed with EMan on my knees, a photo of me wearing a sling, me looking thinner or general comments about me not feeling very well, the reminders have been there. Given the length of my last blog, I thought the following would commemorate said anniversary, without getting too deep reflecting on our thoughts and feelings…

I saw the following pop up one day, and saved it, in preparation of my big 03.

  

My response when I saw this pop up on 20 June?

“I proved her wrong, didn’t I?”

How Housemate guffawed. Uncomfortably. 

See, myeloma is not always bad. 

The following comment proves my previous statement wrong FYI, but that’s okay. I had to be disconnected from an IV drip whilst naked the other week, so very little embarrasses me.

  
EJB x

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Bon Anniversaire

Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.

Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?

For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.

Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience,  but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of. 

Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me. 

It was indeed a Big Day. 

I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world,  but I will not be doing any of that today.  This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.

Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.

Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.

It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naïve enough to believe there was  something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap. 

It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded. 

My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know. 

As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far. 

Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise.  I could have just said what I am about to say five paragraphs ago;  My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.

My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that? 

Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility  that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my  friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading. 

I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”.  I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead  he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I  feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that. 

Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest. 

It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.

EJB x 

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Something New

WARNING – This blog contains some straight forward, no nonsense complaining and absolutely no humour whatsoever

Yesterday was my first day of treatment for Transplant Number 2, officially known as Day-6. Yesterday, will unofficially be known as my worst experience of NHS care. Yesterday was also the day I did something I said I would never do, and it was the day I shouted at a Medically Trained Person. Twice. I am part completely ashamed of myself and part sitting in my flat, wishing I did not have to return back to that hospital today. 

I feel ungrateful and belligerent. The bottom line is that St Bartholomew’s Hospital is doing a very expensive procedure on me, that my hospital would not do. That is the bottom line. It’s a procedure I need and without it, you could all but guarantee that I would not see 2025. My brain told me this many, many times yesterday. Why should I expect any extras like a smile or good communication. The NHS is overworked and thus should they  only be expected to plan and deliver the treatment because that is all they have time for. Perhaps there is no time for niceties.  Doctors and nurses work long hours and inspect faeces, that is something worthy of everybody’s respect. I should just be thankful that they are giving me the treatment I am getting, shut up, express my gratitude and get on with it. 

That would make for a short blog though. 

I did not feel comfortable or comforted once yesterday. I felt like a nuisance. The more upset I felt, the more tired I got and the more agitated I became. I walked into that hospital feeling hopeful and left feeling deflated and weak. I exaggerate not. I got home and slept for 12 hours plus extra snoozing, how much of that was due to the chemotherapy or to my experience I do not know. I can assume that the anxiety I felt for most of the day, was not a good starting point for my treatment. 

I have spent just under three years experiencing a rather marvellous service provided by the NHS. I do not know the budget differences between the two NHS trusts, but I think I can safely assume that UCLH is also operating within tight financial constraints. UCLH often runs with delays, I know this because I have in my time experienced them many times over. Delays that would allow for a screening of  Gone With The Wind with an interval and lunch. Yesterday, I remembered with longing the five hours I once had to wait for an injection of Velcade. As annoying as that was, it was explained to me and the bad news was delivered with a smile. 

It is not fair for me to compare the two hospitals, but it is incredibly difficult not to. I do not know any better. 

When it comes to the NHS, I like to consider myself a seasoned veteran. I am no stranger to a busy ward, red tape and a strange system for dispensing medication. I know full well that I have been spoilt at UCH’s Macmillan Cancer Centre with it’s comfy red seats and foot rests. I knew that going in and I levelled my expectations appropriately.  At least, that is what I thought. 

Perhaps yesterday just wasn’t my day. Perhaps it wasn’t the hospital’s day. 

Prior to my treatment starting, I had agreed that I will have my treatment as an outpatient for as long as is possible. St Bart’s does offer an ambulatory care, which is referred to as the ‘Hostel’, something, I am told,   should not be compared to the Cotton Rooms at UCLH.  I was given the option of staying there or at home and stay at home, in my own bed, I chose. The plan is for me to come in for five days in a row for treatment. Before yesterday, my expectations on how the conditioning was going to pan out was based on my word processed itinerary. Plus an added hour or two on each day, based on my very own My Myeloma  experience.

  

Yesterday, I arrived at the hospital at 10.26hrs and left at 17.25hrs.  

Big whoop I hear you full timers say. People will have worked for longer yesterday, the people treating me will have had a longer day, but for me, that is a long day. It was a very long and frustrating day. It started promisingly, on arrival I was taken straight through reception and I was told that the order of events was as follows;

• have my bloods done

•PICC line inserted

•See doctor for final go ahead 

• Receive the chemotherapy. 

On the face of it, that is exactly what happened, minus the massive gaps of lost time in between. Massive gaps.

Am I asking for special treatment? Am I being the ‘princess’ a nurse once called me during Transplant Number 1 the First? I worry that that is how I am perceived. The complaining heifer.

It was not until after I had had my PICC line, an x-Ray and waited 75 minutes to see a doctor at 13:35hrs, that I was told that I should expect to be in the hospital for a while. When I met with the doctor at 13:35hrs, I was told that they could not prescribe my chemotherapy until they had received my full blood count results. Results that they had  yet to receive despite the blood leaving my arm at 10.30hrs. To give you a little perspective on this, it takes 15 minutes at UCH. A point I reiterated later in the afternoon along with the fact that my bloods would have been tested quicker had I gone into an A&E. An A&E is not a specialist oncology and Haemotology unit. 

Fast forward to 14.15hrs, I was informed that the chemotherapy would be ready at 15.45hrs. Exasperated, I decided to use this time to have a nap. At 16.40hrs, a nurse hooked me up to an unexplained something. Experience told me it was just a flush, but I did not know if the chemotherapy had been added to the bag. Fifteen minutes later, I discovered that it was not my chemotherapy because two nurses came along with the chemotherapy. 

I cannot begin to describe how frustrating it was not knowing how long I was going to be there for, and  the estimated times I was given not being followed. I became more and more agitated as the day went on, and I did point out during one of my rants that if somebody had told me sooner that it was going to take six hours to get the chemotherapy in me, I could have left and come back. There were several opportunities for the Medically Trained People to do so, but they did not.

The delays were bad enough, but apart from the kind ladies who put in the PICC line, every encounter with a Medically Trained Person was cold, clinical and distinctly lacking in communication. At one point, two people treating me spoke to each other in a different language. One of the nurses told me that if I was concerned about the wait, I should just be thankful that they put the PICC line in without waiting for my blood results. 

After the PICC was inserted, I was required to get an X-ray to ensure everything was tickety boo. I am familiar with an X-ray, but I was not familiar with the process of being taken into the X-ray room and being instructed to change without a curtain whilst the machine was set up. Similarly, I did not expect two women and a man to be walking around the room whilst I attempted to put my bra on after they had completed the X-ray. 

Again, do I expect too much? 

I am by no means squeamish, and as I  fully understand the need for people to be medically trained, I did not mind when I was told that the person inserting the PICC line was doing it for the first time. I did struggle with the educational narrative and corrections that came from the supervisor throughout the procedure. With every correction, I could feel the tugging and the cutting and I become increasingly aware that I had a hole in my arm with half a metre of tubing entering my body . Fortunately, I had some tools in my arsenal and towards the end, I found Julie Andrews singing ‘My Favourite Things’ in my head on repeat. And then I didn’t feel so sad. 

At some point in the middle of the day, I started to cry. I then cried a few more times. I was alone in a new hospital, where nobody knows my name and nobody seemed to have a desire to learn it. 

It was too much for me. 

Expecting a prescription that I was told would be there and was not, was too much. Explaining to the doctor that I needed one anti sickness pill and not the lesser anti sickness pill, to then be given the lesser anti sickness pill three hours later was too much. Being prescribed less laxatives than I require and asked for, was too much. Not having my questions answered about the immediate side effects of the chemotherapy (I’m talking poop) by the doctor and nurse I asked, was too much. Trying to arrange my treatment times for Saturday and Sunday and being told that they cannot be booked in more than 24 hours ahead, was too much. Asking how it will work with my daily checks after Day 0 and being told to ‘just concentrate on my chemo’, was too much. Listening to an elderly gentleman scream out in pain as a staff attempting to give him a new cannula was too much. Being told that I should have known that ‘Day One was always like this’, was too much. 

I have often said that I would never shout at a Medically Trained Person. In April, during Transplant Number 1, I saw a lady get angry with the staff in Ambulatory Care. Initially I felt angry  that she was talking to the staff that way, but when she explained that nobody had explained what was going to happen to her and that she was scared, I understood. I am at a new hospital and I do not know how things work. Yesterday I was told to sit in a seat and wait and at no point was I told in clear terms what was going to happen and how it was going to happen. There was no introduction and no explanation. I imagine that this is what boarding school feels like.

I just have to like it and lump it. God knows how many days of this I have left. 

EJB x

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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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Tales of the Unexpected

Sometimes in life, and I say this as a 30 year old myeloma sufferer, things do not go as planned. Apart from the original diagnosis, the early side effects, the setbacks,  the tumour and the relapse, My Myeloma has become  quite predictable. Once I have been told a medical plan, I can, with a teeny amount of confidence, know what to expect. 

It was a similar experience coming in to this transplant. I planned, I prepared and I purchased pyjamas; all in anticipation of this transplant running a similar, if not worse, course to the previous one. I told myself it could be different, but only in my assumption that it would be worse, than my memory had imagined, and that was only so I could take the pain if it was. It was a theme that I also hoped would dull the competitive feelings I had towards beating all the negatives of my last transplant. A transplant that saw me go home on Day +16, after being hospitalised on Day +4. What happened in the middle does not count.

Ahead of the first transplant, I was given a whole heap of reading materials telling me what my transplant was going to be like. I chose not to get it and read it all over again this time around, for I had remembered the side effects well enough. Plus, I knew a Medically Trained Person was going to talk me, face to face, through the process and it’s side effects before I could be  prescribed the Megatron. 

Mouth ulcers, diarrhoea, fatigue, nausea, hair loss, temperature, infection and hospitalisation. To me, those side effects were nothing but definite. In my transplant daydreams, I can confirm that said infection was never more severe than the one dose of antibiotics realm (well, when I was not being weak willed). 

It was just a case of waiting for them to start.

Today is Day +11. I feel sick, liquids  and my limited solids intake are followed by many a beefy burp, my hair is falling out, I am constipated, I sleep for 12-16 hours a day and I am able to be comfortable and functioning out of my bedroom for up to one hour each day. I have felt this way since Day + 2. My mouth no longer feels like I have bathed it in sour milk, but on the other hand, I have not deposited anything since Friday afternoon. I did wake up multiple times during the night and this morning experiencing something new, and that new was a little blue, in the form of significant lower back pain. So bad in fact, was said pain, that two hours after waking I was convinced my kidneys were failing. It transpired that the pain is caused by the injection I have had to have everyday since Wednesday. 

From the list above, there is one key and inevitable component missing. It has beds in it, lots of Medically Trained People, too few lifts, a mediocre canteen and views of London other buildings would make you pay for. It’s the hospital. I am not yet in hospital. In addition to this absence, I have also come nowhere near soiling my pants.

The question that has been plaguing me since around Day + 7, is, at what point is it realistic for me to stop waiting for the bad things happen and start planning my discharge? Then, in having asked that question, have I jinxed any chance I have of remaining poo and infection free for the rest of this transplant experience? Actually, have I already asked for the quick and severe enslaught of illness, when I sent an email to my friends at the weekend,  suggesting that there was a small chance that I will not go into hospital, and thus, I needed volunteers to sleep next to me in the hotel this week? 

I have many more questions. I asked the Medically Trained People whether I should be worried about not going in to the hospital yet. Mamma Jones asked whether this would have an impact on the success of the transplant. I asked if it would prolong my overall stay. We haven’t had any comprehensive answers to these questions. On Friday, during rounds, I was told that with everyday I am out in Ambulatory Care, I am a day closer to going home. At the time, I was placated, but with hindsight, that answer is something of a misnomer, for that statement  would also be true were I in hospital. 

I cannot get an answer from anybody. At least, I cannot get one to satisfy me.

My White Blood Count has been rising for the last three days, not to dizzying (or should I say dizzy-less) heights*, but rising all the same. I asked if this meant I was improving. Words were said, but they did not create an answer. I was told that the doctors will look at my neutrophil count, which had been flat for five days. Flat by the way is just a fancy way of saying ‘zero’. Apparently, people are usually flat for ten days. STOP THE PRESS: I just had to go and pick up some emergency morphine from the clinic, and I found out that today’s neutrophil count is 0.49. With regards to pooping green and going into hospital over simply going home, what the devil does this mean? 

This morning I was told that if I were to get a temperature, it would most likely happen today or tomorrow. What does this mean? Six other people had transplants on the same day as me or on the day before and I wager that they have all seen 38 degrees Celsius by now.

I do not trust any of this. According to the nhs.uk, 70% of stem cell transplants experience mucositis, either oral, gastrointestinal, or both. I had no idea there was a magical 30% to whom the colour green, when it comes to the human body, will only ever apply to eyes. Am I in this 30%? Does the 30% include people who have been given Melphalan? Does it? 

In all my planning, not being admitted to hospital was never an option. Over the last week, I have discovered that on very rare occasions, it does happen. With every day that passes, these people become bigger than the Loch Ness Monster to me. Bigger because I do not aspire to be the Loch Ness Monster.

My biggest worry? How reasonable and how healthy is it for me to hope that I can be bigger than the Loch Ness Monster? I do not cope well with disappointment and right now, because I have done nothing but wait and hypothesise, with so many questions unanswered, I have no idea which thoughts and what hopes are realistic. I need to know. If I knew, I could plan. If I knew, I could manage. If I knew, I could stop myself from thinking I am a failure if I ended up getting a temperature or the squits this late in the game. 

It may sound like I have been enjoying  some sort of Freeview only retreat for the last 12 days, but let us not kid ourselves, I am not well. Not being in the Tower is misleading, it’s misleading because thus far I have avoided infections and pain; I did not avoid the transplant. It’s easy to forget that my body is going through quite an ordeal. It can even be misleading to me, it’s misleading because getting dressed, wearing day clothes and walking 160 metres to and from the clinic each day, no matter how much I struggle to do it, makes me temporarily forget that my body is experiencing an ordeal. 

Every other day, I end up getting so tired by talking to a friend for an hour on top of the 20 minutes of observations, that I am forced to sleep for three hours afterwards. A sleep that comes only after I express my shock and question why I feel so poorly. On the days around it, I just sleep. When I am not sleeping, I am waking up with anxiety or from anxiety based dreams. When I am not sleeping, or experiencing anxiety, I try to watch the television. It would be fair to say that I struggle to follow the plot… When I am not doing any of those things, I attempt to hold conversations and believe you, me when I say that, ‘attempt’ is the operative word. 

Fatigue is not just about the tiredness. This whole process; the waiting, the questions and the process is exhausting. Plain and simple.

Who knows how long this will all continue? 

EJB x

* I think that was a blood joke, I have no idea if it works, I’ve taken some morphine.

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Groundhog Day

Even though I have had cancer for, like, forever, I am still required to have the occasional bone marrow biopsy. Even though I have had cancer for, like, forever, the thought of a bone marrow biopsy fills me with dread and impending doom. If in fact, one can grammatically be full of impending doom. This morning, I woke up full of impending doom because I knew that at 09:00hrs, I would be forced into lying in a fetal position to allow for a bone marrow biopsy. I had been through an almost identical day before, for today was the Pre Transplant Tests Day. 

First things first, getting up early enough to be in the hospital before 09:00hrs, was not a pleasant experience.  I actually saw commuters, the nine to fivers. What a way to make a living. Before I had reached the hospital therefore, my day had started badly for I should have been woken up by Housemate and his dog and not by my alarm clock. Alarm clocks are for healthy people and not those who take a Diazapam before bedtime. I also knew that I faced a day of a biopsy, a kidney test known as a GFR Measurement, a Cardiac Scan and lots and lots of needles.  

The biopsy was just like the others before it, summed up with one simply word ‘painful’. This one however, had added blood and I ended up bleeding all over what looked like a puppy training pad, the waistband of my jeans and a little bit of the bed. I took a photograph of the latter to prove that I am not exaggerating.



Over time, I have learnt that the pain of having somebody remove a wee bit of bone and it’s juices from my body is lessened by having a friendly face to look at, that will talk to me whilst the dreaded deed is done. Today was no different and I had the addition of said person allowing me to squeeze his hand whilst I was pulling labour like faces and wincing. It all helped.

Following that little procedure, we endured a 85 minutes wait, as I waited for the next appointment, known as the GFR Measurement. Google tells me this stands for glomerular filtration rate, which is, apparently, ‘the best test to measure your level of kidney function and determine your level of kidney disease’. In practice, the test  was a right royal faff. It required my  companion and me to go back to the Insitutue of Nuclear Medicine five times over the course of the day to allow some Medically Trained People to take my blood after they had put some sort of potion into my body. Plus, two expertly administered cannulas in each arm. Due to a desire to protect my favourite vein, I opted to have the second cannula in my left hand, which meant I spent two hours sporting what looked like a mitt on my hand. Needless to say, doing up my trousers was quite troublesome. 

The first visit involved the potion being administered along with your bog standard flush. It looked very much like the photograph below.



I then had to wait for two hours before returning to the fifth floor of the magical tower that is University College Hospital, where a Medically Trained Person took my blood. I then returned an hour later when another MTP took my blood. I then returned an hour after that when another MTP took my blood. It was like Groundhog Day, with the added bonus of blood. My blood.



The whole thing was over by 16:15hrs, so let us all keep our fingers crossed that the results show a reasonable renal function. I really need something else to boast about.

Somewhere in the middle all of that nonsense, I had the cardiac test. I think this also required some sort of potion entering my body, but there was so much going into my body, there is a chance I missed it. These days, my motto has to be ‘Just Let Them Get On With It’. 

Even though I lost track of what was going into my body (an excuse for obesity if ever I have heard one), I did not miss having to lie on a flat mental bed whilst a machine took some expensive images of my heart for 15 minutes. I was also attached to an ECG machine. I must not forget that part if you are to get a clear picture of just how exhausting my day has been. I likened the machine itself to sticking one’s breasts in an upside down photocopier for laughs. Again, I documented the experience.





As is evident from the photographs, I found the experience quite sensual, what with the Velcro straps and all. It was sensual right up until the point when I had to sit up, when it became masochistic, well, if I enjoyed it. I did not. My back, along with the small hole in it, definitely did not enjoy the process of sitting up. I also did not enjoy the reminder that I still, after all this time and treatment, cannot lie on a flat mental surface and resurface without experiencing pain.

That was my day. Not all of it you understand, we need some secrets, but it pretty much covers what happened between the hours of 08:00 and 17:00. It was all too, too much for me and at 19:00hrs, I can confirm that I am in need and indeed, in my bed.

It would be most remiss of me not to mention that my day would have been nigh on impossible had I not had somebody to share the experience with me, hold my hand when I needed him to and who entertained me between blood samples. Indeed, his day, selflessly started before mine did, as he arrived at my house before my departure and accompanied home once it was all done. Even though I am tired and my back feels, as the the late and very great Mr Griffiths would say  like it has been kicked by a horse, I have a warm and somewhat fuzzy feeling in my stomach. I take this as both fondness and gratitude. Of course, it could just be because  we discovered the quiet solitude of Cancer Centre’s roof garden and not because my friend did something very nice for me. It’s hard to tell, I am full of unknown potions.





Now, let us all hope that this was worth it and in 15 days time, I’ll be on the verge of shitting my pants.

EJB x

Annex A: I ❤️ the NHS. You may be interested to know that during my day, I was treated by two nurses, four nursing assistants/technicians and saw two receptionists, not to mention the other people I saw and spoke to along the way. My tests also need to go somewhere once they are done and I there are several, faceless people behind the scenes including the people who will process my blood samples, contributing towards my wellbeing. What a service! It makes me quite proud. Also, those people in the labs, testing our bloods, always need a little shout out. 

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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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Happy Anniversary

Get ready throw paper in my general direction, for today is my first anniversary. Correction, our anniversary. Who would have thought that one year down, and my arranged marriage to myeloma is still going strong? We haven’t even needed to take a break yet. We have been entwined for 364 days. Myeloma and me.

One year ago, on that fateful Friday afternoon when I was told that they were almost certainly had myeloma, I had no way of envisaging what that would look like and what it would do to me. I don’t think anybody did, even the Medically Trained People.

Since the 17 August 2012, so much has happened, and though at times, I feel like I have absolutely no progress whatsoever. It is gone quickly and at a snail’s pace. Sure, I had a partial response (that’s officially terminology you know), but then I didn’t. I then had another course of treatment for which I had a limited response (that is not officially terminology), and then I had a transplant. What comes after that is for Year Two. I said it at my halfway mark, but it does not hurt to review what has happened to me since I was diagnosed.

Medically, it has been a total treat for me. I now have a high pain threshold, I am excited by my faeces and developed a fear of Oramorph. These things have happened because I have had two different courses of treatment, which in total involved 40 Velcade injections, 24 doses of Doxorubicin, 224 thalidomide tablets and 800 horrible Dexamethasone tablets. Lord knows how many maintenance drugs I have taken, I wager that in the tens of thousands. I have had radiotherapy on my right hip, which is involved me getting a tattoo on my lady garden. I had my heavenly Kyphoplasty. In February, I got to have a large bag of cyclophosphamide leading to a rather pleasant bladder infection and a trip to A&E. I have no idea how much bone juice (Zometa) I have had, but I know that has done some good. They have drilled into me three times, with three bone marrow biopsies. My stem cells were harvested and then after a lengthy and devastating delay, they were put back into me. If I had been scared of needles one year ago, it would have been, well, pretty buggered. In addition to the medicines and procedures, I have slowly watched and be told that my veins have become shyer and shyer, I have managed hair loss including losing all of it twice, I cracked a few ribs and I taught myself how to walk again without grimacing and dealt with the high probability that I will not be able to have children.

It’s not what I imagined for my life.

I discovered early on that myeloma is not just about the medicine. It is about me. As I have struggled with my drugs, and the lows getting lower, I have had to deal with myself and I never know if I have managed it properly. I have no idea how I have taken it all in.

Fatigue, not working, becoming disabled, accepting that my lifespan has reduced, whilst trying to block out the noise from strangers telling me that I will be dead in ten years (nine years now) for I do not plan to be. It has and continues to be an emotional roller coaster, and it would be that anyway, before we factor in the mood altering drugs. I have cried a great deal, argued with friends leading to more tears, I made certain people key players in my Support Network regardless of whether they asked for the role or not, consequentially, I have felt and continue to feel a warm fuzzy feelings of love when i look at their faces, but flip the coin and I have also felt disappointment when people have not lived up to the expectations I put upon them. I fancied myself in love and had to deal with the heartache of realising I am Glenn Close with cancer. I have been angry with everybody for not understanding how I feel and jealous at them for not having to understand. I have experienced such feelings of isolation and loneliness, on the island that is my bed that I have sobbed uncontrollably for hours. In a year, I have given up so much and yet, I have I still wake up everyday.

Some time ago, well, within the last year, somebody said to me that he knew I would be fine (he was talking about my mental state, for he was not a Medically Trained Person, a first aided maybe). He said this because unlike other patients he saw, he said that when I answered questions about My Myeloma, he saw a laughter behind my eyes. I do not particularly buy into that sort of greetings card language, but I know what he meant and I felt it. I felt that my personality was still there and I felt like my glass was half full, all in spite of the wretched disease. I do not know if I feel that now, not everyday. Over the year, I have felt My Myeloma slowly suck out some of my positivity. It hasn’t gone completely. I hope it will not go completely, and I am clinging on to it for dear life. It just feels like it has depleted. I am not looking at myeloma with rose tinted glasses anymore. Big Sister says I am morbid, but I see it as realistic.

I have had few days where myeloma has not featured, and had many days where it rules. I still do not want my myeloma to define me, but I know now that it has to form part of me and my personality has changed. That is what the year has shown me. My Myeloma is omnipresent. I have dealt with it by living around it and getting on as best I can, but it is there. I know that this is all I can do.

So, one year down. The only thing for me is to continue to get out of bed everyday, and hope that I can remain strong enough not to let My Myeloma to consume me. That would just not do at all.

As for my Support Network… Thanks. Go easy on me yeah?

EJB x

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Babies 🍼

Yesterday, I had my long awaited appointment with UCH’s Reproduction Unit. Prior to the appointment, I did not expect to get any firm outcomes or absolutes; this turned out to be the case. As I said to the doctors, it is something that I expect now from in all aspects of my treatment. No absolutes and no guarantees.

First off, I was once again was impressed with the service provided by UCH. My appointment was multidisciplinary, with four doctors attending. One from the Haematology Department to explain the impact of my treatment and three from the Reproduction Unit. Actually, I think two of them were there for training, but at least it made me feel like I was having a serious appointment rather than one to placate the 28 year old single girl suffering from cancer.

I would just like to confirm that I did not fall asleep in the waiting area prior to my appointment in a Velcade Moment (yesterday was predominantly made up of Velcade induced sleep, hence me blogging now and not yesterday).

At this juncture, I have all but reconciled myself to the fact that I will be infertile once my treatment has concluded. I like to think that this is realistic rather than pessimistic. There are too many variables and the odds are firmly stacked against me and my ovaries.

Treatment vs. Babies

My only option at the moment is to continue with my treatment. As much as I want to safeguard my childbearing future and bank those eggs, my health is paramount and there is no time to freeze my eggs. No time. There is not an anticipated break in my treatment either, which would allow the Medically Trained People to collect them at a later date. The annoying thing, and actually I am glad I did not know this until yesterday, is that my current treatment is unlikely to affect my fertility. The chemotherapy drug I am on does not pose a great risk. If they change my chemotherapy? Well, then that may or may not have a negative impact. The principal of my trial, if successful, would buy me time to fertilise my eggs, providing I had a complete response and did not require a stem cell transplant at the end of it. Realistically, this is not going to happen either, and I will require a transplant. If I come off the trial next week, I will definitely require a transplant.

I am told there are no firm statistics, but given the amount of chemotherapy and radiotherapy required for a transplant, either your own or a donor, the chances of being fertile at the end of it is 5-10%. For the donor stem cell, there statistically more chance of me dying during the procedure than me being able to have biological children after it. That is one scary statistic.

But my health is paramount. It is a horrible situation to be in, but I want to live. That is my goal and if I succeed, I can find a way to have babies afterwards. Do you want to give me one? I promise not to make it obese.

It is not all doomed. Again, there is no guarantee that this will work, but the Medically Trained People can give me a drug that temporarily shuts down my ovaries, with the hope that it fools the chemotherapy into not attacking them. The odds of this working are slim and there are side effects with the drug, but as I explained to the doctors, I am willing to try anything, if it gives me a glimmer of hope that my eggs will be saved. I have yet to Google the drug, but the side effects are essentially those experienced by ladies going through the menopause. Hot flushes and a dry vagina. A dry, tattooed vagina. This I can cope with. Apart from my tattoo, it’s only temporary. The drug also thins your bones, but I have Myeloma, so….

I am not sure when I will start receiving this injection, but I will ensure that my haematology doctors liaise with the reproduction doctors about any change in my treatment. More drugs, but I can see what this one can achieve, and I think it is worth it. I want children that much.

I had to ask the question whether I would physically able to carry a foetus full term, and again, they don’t know. Nobody knows what state my bones will be in the end of this. I just have to sit tight and wait. Tick, tock, tick, tock, your biological clock.

Not being able to have children is an emotional subject for me. You may ask if it is so important, why I had not cracked on and popped a few out already. Well, I hadn’t. It was not how my life was structured and I did not anticipate getting cancer, let alone a cancer that is such a bastard. I thought I had loads of time. Single ladies, go out and freeze your eggs now! It’ll be like having a pension. A little bit of extra security.

As it is such an emotive issue for me, I could feel the tears come during the appointment. I fiddled with my bag and took notes, but then the headache started and my voice started to break… So what did I do? I started to hysterically laugh. Hysterically laugh about my sister. My sister was considering doing a sponsored parachute jump, to which I said she could not. There is too much riding on her. Her stem cell, her eggs, her. The haemolotologist agreed. I think they may have thought I was a little mad. The laughing was ridiculous and was accompanied by me saying on repeat “we’ll just wait and see”. I think I held it together quite nicely. I left the appointment room, walked down the corridor, stepped into the lift and burst out crying. I then left the building, walked to the main reception, booked my travel, purchased a packet of prawn cocktail crisps and cried some more. I cried because I have to wait and nobody can tell me what is going to happen. But then, I knew this already. Then Middlesborough texted, at just the right time, and she reminded me that my health is paramount and I realised that it is. At the moment, surviving is all important and anything on top of that is a bonus.

And thus, I will sit tight and wait. Tick, tock. Tick, tock.

EJBx

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