Monthly Archives: December 2014

Another Year

One can quite easily romanticise the eve that is New Year’s. In anticipation of an unknown future, it is very easy to hope for better things. If you think I am generalising, I might well be, for I am really talking about me. I am guilty of romanticising New Year’s Eve. If the outgoing year had been a good one, I’d go out on a high and expect equally good things for the year ahead. If my year had been rotten, I’d grasp onto the old adage out with the old and in with the new, hoping that as the clock turned from 23:59hrs to 00:00hrs my luck would magically change. It’s a silly concept really, I know that it is just another day, but there is still something inside me that says a new year should mean some sort of new beginning.

This year, as 2014 finishes and 2015 begins, I have a problem. It was a problem that was presented to me on 18 December and one that I had been aware of long before that date. It’s a myeloma related problem. My problem is fairly straightforward in it’s complexity. I know what my 2015 looks like already, well at least the first 6 months of it, and it is not something I particularly want to get sloshed in anticipation of this evening. Not only do I know what the start of my year holds, I know that I can do absolutely nothing to influence what is going to happen. My future is completely out of my hands. It is just going to happen and the only thing I can do, is hope for a happy outcome.

On the 18 December I finally found out what the medical plan is for me and it is a plan that involves a lot of pyjamas. It is a plan that means my 2015 is going to revolve around feeling unwell. In fact, the only thing I have to look forward to, is another old adage; 2015 for me, is going to have to be seen as a means to an end.

After another cycle or, possibly and hopefully two cycles of treatment, so in four or eight weeks time, I will be having a stem cell transplant. Not a donor transplant as I had anticipated, but an autograft. I’ve done it before, so I know how delightful they can be. Then, two or three months after that is done and dusted and my curly hair is no more, I’ll have a full donor transplant. I anticipated the latter, but not both. Both does a poorly Emma make. If my calculations are correct, that’ll take me up to at least June. Just like that. Six months will be gone. If all goes to plan, I will then spend the rest of the year recovering. I have done my research, and I am aware that the recovery from an allograft is no picnic and I know that I am being optimistic allocating six months to it. That six months by the way, will take me up to 31 December 2015.

I have never experienced a New Year’s Eve where the year ahead is already determined. I have never experienced a New Year’s Eve where I have hoped to fast forward to the next one. This year, I have no need for resolutions, unless ‘Do not die’ can be considered a resolution. I have no need for the January sales, unless it is for nightwear, because I have no idea what is going to happen to my body over the next six months. I have no need for plans post February because realistically, I know that I’ll be spending at least 10 months in bed.

My New Year is going to be completely dedicated to myeloma and I know that is not an exaggeration. Things may happen around that, good things I hope for the people around me, but predominantly, my year will be dedicated to ‘getting better’. Whatever ‘getting better’ looks like.

My 2015 is going to be dedicated to some intense treatment that will test me. It’s going to test me real good. Of course, what happens with this treatment is not completely determined. There is a massive elephant in my head that makes the end of 2014 and the beginning of 2015 quite terrifying. So terrifying, that I would like to stop time and stay in 2014 for a few more weeks. I know that as the countdown begins, a much bigger countdown will also begin in which I will stop floating along waiting for something to happen and I will walk straight into that something happening. It is quite daunting.

I have spent a few days now pondering what 2015 will bring, and the only certainty I have for me is that it will bring illness. I do not cherish that thought. I do not cherish some of the uncertainties of my future treatment either. I just have to hold on to the idea and faith, if I were to have faith in something it would be this, that some of this uncertainty will result in good things. Better than good. I have to try not to dwell on what will happen if those unknowns are not as positive as I need them to be.

Yesterday, I was reminded that in this dastardly life of myeloma, one (that would be me), needs to continue to hold their head high. One needs to be positive and one, when the situation looks like it can get no better and may not get any better, can be strong. The ground has been laid and I suppose, as scared as I am of it, I just need to step to it. A marvellous person showed me that this could be done, and thus, I have to endeavour to not feel sorry for myself despite knowing that 2015 will be the opposite of fun. I am lucky to be able to have this treatment in the first place.

Thus, I’m convincing myself when I say to 2015, Bring It On. That’s right, bring it on. Two transplants? Bring it on. Lots of time in bed? I have many pairs of new pyjamas.

So, I’ll be drinking responsibility to that this evening… I’ll also secretly be hoping that at some point during 2015, my luck, will somehow, with the help of one or two or a million plus stem cells, change for the better.

In the meantime, I wish you and in particular my friends and family, a very Happy New Year. 2015 is going to be a riot.

EJB x

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Cover Girl

Many moons ago I thought the only chance of me ever being a cover girl, would be if I won a regional competition for being the prettiest larger lady and my prize would be to don the cover of a mail order catalogue for affordable plus sized clothing. Little did I know that at the tender age of 30, I would end up on the cover of the edgiest quarterly publication out there. If you are not familiar with the latest pop up restaurant, think a beard worn with tartan is the epitome of cool and your favourite day of the year is Black Friday, you probably have never heard of Myeloma Matters, let alone know where you can find yourself a copy. The charity Myeloma UK is a good starting point in case you were interested.

Myeloma Matters tells you everything you need to know about myeloma. Essentially, it tells you what matters and it tells you every quarter. This quarter, what matters is my patient experience.

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Regarding my patient experience, I put the bass in my walk and metaphorically, let my whole body talk to the original tune of 2888 words. My word limit was 1200-1500. It turned out that I have a lot to say about what has happened to me since I was diagnosed. I have so much to say in fact, that two months after I finished writing ‘my experience’, I still want to add things to it. I want to go into more detail about how lonely myeloma can make me feel. I also want to talk about important it is for me to have people around me that understand my mood swings and how difficult it has been for me to understand that my Support Network do not always understand that. If I did that, Lord knows how much would have had to have been edited out by the kind people at Myeloma UK; they had their work cut out for them as it was.

So, if you want to know what this blog could sound like with the benefit of editing, please visit http://www.myeloma.org.uk/information/myeloma-matters/.

This is a useful exercise if you need a refresher in all things Bones. Some people get a degree in two and a bit years, I have experienced something else entirely.

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If you really wanted to indulge me, you could read the original, unedited version, which I have kindly added to the bottom of this blog. It will come as no surprise to many of you, that I prefer the longer version. I imagine you’ll prefer the shorter one for the reasons most obvious.

I thank Myeloma UK for giving me the opportunity to exhibit. I definitely gave them face.

EJB x

Once upon a time, I like to think that I was a rather typical, if overweight, 28 year old single lady living and working in London. I say ‘typical’, my life was what I wanted it to be, featuring lovely friends, a loving family, a job I enjoyed and an active social life. I enjoyed these moments, my moments and my experiences, and I never considered that I should have been doing something more constructive with my time, because I was 28. I had loads of time to experience the many things society associates with true adulthood. Babies, promotions, becoming a homeowner and starting my own family were to be my future, at some undisclosed point in time.

Instead, in the June of 2012, I got a sore shoulder…

At least, the GP told me that the pain was coming from my shoulder; the reality, as you can guess, was quite different. My first visit to my GP on 20 June came about because I thought I had a chest infection. I self diagnosed it as a chest infection because there was a pain in my torso unlike anything I had ever experienced that hurt whenever I coughed, talked or breathed. The fact that I went to the doctors in the first place, is a testament to the pain that I was in. I was very much not a doctor person. Fortunately, I am now very much a doctor person , or Medically Trained Person person, I’d be in dire straits if I was not.

To say during this appointment that the GP was dismissive of my pain would be an understatement. In short, avoiding the points I would later complain about, I was told that I had torn my rotator cuff and that by the time a referral had been made to see a physiotherapist, the pain would be gone and I would be better off looking up exercises on YouTube. As for pain management? Paracetamol. Just Paracetamol. Of course, the pain did not go away. Over the following month, the pain got considerably worse, and it was not until 30 July that I worked up the courage to not be discouraged and visit the GP again. It was a more productive visit and I was sent for a blood test and a chest X-ray. For some unknown reason, out of the four hospitals I could choose from to have my tests, I chose to have my tests done at University College Hospital. It was a small decision, that I have congratulated myself for making nearly everyday since.

My next GP appointment was on 14 August, and in the short amount of time between appointments, the deterioration of my body was something to behold. I could barely walk. I somewhat ironically spent all of London 2012 on my back; some legacy. Having never experienced ‘back pain’ before, I thought the sharp shooting pain from my lower back that made my legs give way on the middle of Shaftesbury Avenue to be a normal symptom of ‘back pain’. During my appointment, the GP told me that there was an anomaly in my bloods and I should go home until she had spoken to a specialist at the hospital. Twenty minutes after getting home I received a call telling me to go to A&E, where I would likely be admitted because my calcium was too high. The doctor told me that I must have felt very unwell. My response was, and still is, what is unwell, what does it look like? I felt tired, sure and felt like I had the flu, but I just assumed that this was normal when one lived a lifestyle where the candle burned at both ends.

Three days later, having been poked and prodded and had my first adult experience of a hospital, I was told that I had multiple myeloma. In that one moment, everything changed. My life changed. Out went the parties and being awake for more than 12 hours at a time, and in came blood tests, a new vocabulary, scans, medication and Cancer. Not the sort of cancer with tumours, treatments and cures that everybody understands, a blood cancer that nearly nobody understands unless it effects them and thus requires constant educating of the misunderstandings.

Of course, at the time, I did not know by how much my life had changed with the words ‘multiple myeloma’, nor could I truly understand what myeloma meant for me. I say me, because if there is one thing I know for certain, it is that myeloma is different for each person unfortunate enough to have it. The disease may follow a similar and predictable pattern (and it may not – hello, I am 30), but how I feel about that and how I manage that is unique to me, just as it is unique to everybody else who has it and nobody can tell me otherwise.

I get through each day by believing that my myeloma is my own. It’s my mantra, quickly followed by the ‘myeloma does not define me’. When you are 30, have a cancer with only a very slight chance of a cure that has all but postponed the life plan, with that horrible statistic of 10 years hanging over your head, making sure it does not define you, is a mean feat. Myeloma is a part of me, it would be unrealistic to think that it does not impact on my waking day, but it does not define my personality despite the limitations it puts upon it. I can be selfish at times, but my way is the right way for me. There have been many times when people have told me how I should be feeling, what I should not be feeling and what I should be doing, and the truth is, only I have the choice to decide how I feel and what I should do. Most of the time I am winging it, and occasionally, I need need people to tell me it is okay to feel unwell and that I need rest, because I do have a tendency to fight the fatigue.

I need support, sure. I need and have ton of it to get me out of bed everyday, but I need support and understanding, not support in the guise of somebody pointing out the error of my ways and telling me how they would manage a life changing diagnosis better than I do.

Let’s not beat around the bush here, myeloma is life changing. I’m not being melodramatic.

In the 26 months I have known what myeloma is, I have been through three rounds of treatment (PADIMAC, VDT and Revlimid), had a autograft stem cell transplant, experienced the ecstasy and agony of remission and I have relapsed. That is just the cancer treatment. My initial treatment started 11 days after I was diagnosed, and lasted for six cycles, by the end of which my paraprotein level had plateaued at 16 from a starting point of 36. By the time my stem cells had been harvested, my paraprotein had crept back up to 26 and in March 2013 instead of having my stem cell transplant, I was starting another round of treatment. That setback was the hardest thing I have ever had to manage, it taught me so much about the unpredictability of the disease. I eventually had my transplant in July 2013 and with that came 11 months worth of remission. By the time the transplant was over, I felt like a seasoned veteran. In fact, I am a seasoned veteran. I know most the side effects, I can predict them, I understand the limbo and I can give one hell of a medical history on one of the five occasions since 14 August 2012 that I have had to go to A&E.

All that treatment coincided with the treatment for my pain and the damage myeloma had caused to my bones. The majority of my lesions are in my spine, which has meant that in addition to learning first hand the effects of chemotherapy, I had to adapt many of the daily tasks I used to take for granted. In my mind, I have to separate the treatment for the cancer and the treatment for the bone disease, because I see them as two very different things. One makes me very tired, reduces my ability to concentrate and made me lose my hair. The other has made me a disabled 30 year old who can no longer go on roller coasters, struggles to pick up her bath mat and is afraid of public transport. The pain I experienced on Shaftsbury Avenue was me fracturing my L4; this was discovered with my first MRI scan. Four days later I was transferred to the National Hospital of Neurology and Neuroscience for a Kyphoplasty. In that October I had a single dose of radiotherapy on my right hip, and this August, following my relapse, I had five sessions on my L1-L5.

Shortly after my diagnosis a doctor told me that my pain was going to be chronic, something that I strongly fought against, but something that I now see to be true. It is chronic! I am given treatment and drugs to ease said pain but save for a miracle, and I do not believe in those, the damage will never be completely reversible. It took me a long time to admit that to myself. I may now understand pain management, the stupid scale from 1-10 and maintain a strong aversion to Oramorph, but I know that I will always have a minimum daily pain threshold and I will always struggle to look at my blind spot. I am disabled. I call it the ‘invisible disability’, because when I am in public people do not see brittle bones, sore bones and neck spasms. If they see anything, and that is a big if, they see a young, obese person with a walking stick.

I imagined remission to be something it was not. For all the months before my transplant I imagined remission to be the end of the twilight my diagnosis had put me in. Getting there was my focus. I thought remission would be a return my old life, or a return to the ‘new normal’, that factored in my walking stick and fortnightly Velcade injections. Remission was not like that. My remission, at first at least, showed me everything I had lost with myeloma and it was only with my remission, when I stopped working towards it, did I actually come to terms with the grief and loss that my diagnosis caused.

I cannot sugarcoat it, myeloma is a terrible disease. I am 30 years old and it has taken many of the things I loved about my life away from me. I acknowledge that I absolutely and completely hate myeloma for what it has done to me, my family and to my friends.

Myeloma is a constant state of limbo, metaphorically looking over your shoulder (because I cannot actually look over my shoulder) willing for the good to come, whilst being constantly being weary of the bad.

The truth is, it took me a long time to be able to properly admit to myself that having myeloma was a negative. I became so wrapped up in telling people that I was ‘fine’, that I did not see that it was okay to admit I was not. That is a big sentence and one that I am not ashamed of.

I now have several rules that I have to adhere to that keep me strong and that keep me smiling, and most importantly keep me sane. I always confront the negative thoughts. I might not confront them in public, but if I am having a bad day, and I feel sorry for myself because I am hot flushing so much because my transplant drove me to an early menopause, or I am upset because the law says I have to be reminded that I cannot have my own children by having to do a pregnancy test every month so I can be prescribed my Revlimid, or that some ‘friends’ have gotten bored with my myeloma and no longer wish to see me or I start to worry about whether I will be able to continue in my employment, I confront it. I have to let these thoughts enter my brain, in order for me to move on. I throw them away until the next time they appear and there will always be a next time. When I have taken so many steroids that I cannot get out of bed for three days, or when I am in so much pain that my sleep is broken when I attempt to turn, pretending it does not happen upsets me, it makes me feel more upset. I tried putting on a fake smile, but it was exhausting. In order for that smile to be genuine, I have to admit that sometimes, myeloma is a big pile of rotting rubbish. My blog has been an amazing outlet for that, it allows me to throw out the trash as well as keep people informed of my progress. The benefit of the latter point is that it reduces the number of times I have to do the Cancer Roadshow…

In addition, even if I have no intention of leaving my flat, I make sure I get dressed everyday. There can also be no duvet in the day, a blanket on the bed is fine, but no duvet. I set myself mini tasks to make sure that my brain does not turn to a drug induced mush. When I am not working, making sure that my brain is actively engaged is crucial, especially because my medication is no friend of my concentration span. One of the hardest things I have had to learn is to allow people to help me. I was not built in to cry on somebody’s shoulder or to ask somebody to cut my toenails. I have to do that now. Luckily for me, bar the odd person who has fallen by the wayside because the disease is never ending, I have a wonderful support network around me. My family is unstoppable in their support and my London family, my friends, are always around to help me and have adapted how they socialise with me, so that I can socialise. I am a strong advocate of the power of counselling too, as much as my friends and family support me, it is absolutely imperative that I have somebody I can say things too who is independent from my life. The next point I stole on the day I was diagnosed, but it is one that I hold close, and that is, do not believe the stats for the stats said I would not get the disease in the first place.

I can go on, and on about the things I do to hold my head high. I am acutely aware that much of what I have written here appears negative, but I do not see myself as negative, I see myself as anything but negative. I pride myself on how I manage My Myeloma. I see myself as strong and, despite my numerous setbacks, I am still willing to get up everyday and battle with my constant companion, Myeloma.

I said that my myeloma does not define me, but it has made me a better, more rounded and more loving person, if, unsympathetic to those suffering from the common cold, and I think, right now, as I wait for my paraprotein to fall low enough to have an allograft, that really, is all I can ask for.

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Some Festive Cheer

It is Christmas Eve. Christmas Eve happens to be one of the best days of the year, if like me, you happen to love Christmas. I am Kevin McCallister, such is my love of Christmas, it’s traditions and the pure wonder that can be a nicely decorated Christmas tree. This Christmas, more than the last two I have with the disease they call myeloma, I have planned and longed for a ‘normal’ Christmas. By ‘normal’ I mean ‘special’. I had meticulously planned something so much better than the 12 Days of Christmas, so that I could enjoy every single moment of Christmas commercialism. I wanted to gorge on Bing Crosby and Jimmy Stewart until the leftover meat fertilises next year’s tomatoes.

By today, according to my plan, all I should be doing is some elective baking, some constant film watching and some smiling. That is not what I will be doing today. Instead, I have all my presents to wrap, one present to buy and copious amounts of rest to fit in where and wherever I can find it. The need for rest is making me act like Scrooge at the beginning of the Muppet’s Christmas Carol. I do not have the time for it, and all it does is remind me what I was supposed to do.

The reason for my childish want of a normal Christmas will become more apparent as 2015 progresses.

I should have known that my plans would have gone wrong. I should have known that instead of coming back to my parents’ house early to enjoy my nieces’ festive excitement, I would be coming home to my parents’ house to get into bed, via A&E with some antibiotics. I have been a good girl this year; I did not need coal. I have been unwell every Christmas since my diagnosis, so I suppose I am just carrying on with the new tradition.

Now, I would be the first person to put my hands up in the air and wave them around to confirm that I have been displaying the sort of behaviour that shows that I care very much about Christmas and the more I care, the more option I give the myeloma to deviate from it.

Over the last few weeks I have been slowly tying myself in emotional knots in festive anticipation. I have a wonderful example of this. Much to his dismay, and my own surprise, Housemate recently incurred my mighty festive wrath after showed some initiative by taking the Christmas tree out of it’s box and put some fairy lights on it whilst I was out galavanting at 16:00hrs one afternoon. My initial reaction and then the one 24 hours after the deed was done, were ones that some, if they were being polite, could describe as ‘an overreaction’. As I concluded the following day, there is a lot of emotion connected to that Christmas tree. I do not want to be morbid, so I shall not type why it upset me, but if you add a failed bone marrow transplant to future Christmases, you’ll get somewhere near my reasons for wanting a saccharine Christmas.

I do tell myself that I have to be stronger and that I should not complain about my situation. Indeed, I do not want to complain about my situation. Myeloma and Christmas just do not go together and I know that despite what will follow in this blog, there are other families who will feel more pain than I this Christmas. To them, I apologise for my self indulgence…

That said, as it is Christmas Eve, I want to find the festive cheer that left my loins five days ago. In the lead up to Christmas I dragged myself North, South, East and West in order to fully embrace, as fully as my body would allow, the festive good times. There was a voice in the back of my head as I typed the last sentence telling me that I just lied to you. I should have added that as much as I wanted to do everything I did in the lead up, I knew that doing it all would be bad for my body especially when my hospital added five appointments last week. The bespectacled voice also says I probably should have shown more strength and stayed in when I needed to and I should have worried a little bit less about letting people down and had the confidence to think my friends would understand that me needing to stay in and lie on my sofa is not a reflection of my love for them, but is in actual fact, much needed medicine that would have got me to Christmas Day without a temperature of 38.6.

Alas, whilst I will still make it to Christmas Day, I will not make it in the way in which I had planned. I will not have the time to watch the films I wanted to watch nor will I bake the things there are a not enough people in the family to eat. I might not be able to rubber stamp my own wrapping paper for Ebenezer’s sake.

This illness crept up on me at my cousin’s fabulous wedding at the weekend. Not particularly unwell with anything drastic, but I had a fever, a cough and the things that usual accompany fevers and coughs. An annoyance if one is healthy, something a bit more if you are receiving treatment for myeloma. I do not have the resilience to battle it. True to form, to A&E I went on Monday for four whole hours for IV antibiotics. The general public out there with their bugs do not have to do that. They might complain like I am right now though.

Anyway, Mamma Jones says I have to try and get out of bed now. I just watched Die Hard 2: Die Harder. I only added that so you know that I am trying to find some good in a bad situation. I just wish, given the importance of this Christmas, I could do it without factoring myeloma into every single task.

If George Bailey has taught me anything it is that one should be thankful for what they have, so that is what I am going to try to do today and with that in mind, I wish you all a very Merry Christmas.

🎄🎄🎄

EJB x

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The Cancer Dentist

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

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

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

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

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

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

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

I told you this was an exciting blog.

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

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

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

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

EJB x

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