Tag Archives: ill

Man Flu

“Post transplant, you’ll have a weakened immune system”

😷

Quick! Live in a bubble to protect the weakened immune system. The thing with a weakened immune system, even when I am told that my blood counts are misbehaving,  I cannot see or feel any evidence of supposed misbehaviour. My knee bone is connected to my thigh bone, but how is my immune system connected to the stranger who coughed as I walked past them last week? I can feel my back pain, Graft Vs Host Disease and my daily bouts of nausea. I can care about those things because I can see how it all connects in the world of My Myeloma. I take a pill and the pain reduces or if I walk too far, the pain increases. What makes one person with a sniffle the epitome of mortal danger when a person with a passing cough is a mere annoyance? 

A weakened immune system means I am more likely to catch bugs and sneezes than a healthy person. I apologise for stating the obvious, but sometimes, I need the reminder. It also means that once I catch a disease, it takes much longer than I would wish and expect for my body to fight it. An added disadvantage of getting one of these spread diseases is that my body might not even be inclined to fight it. Instead, it might just welcome a few other dirty friends into my cosy camp of a body and then I’ll be stuck spending the next few weeks being reminded that there is a reason I am prescribed two inhalers.

Regarding my immune system, I might not give it too much attention, but I do what I am told. I do not go to public swimming pools and lick the tiled surfaces and I will not eat without washing my hands. I avoid public transport during rush hour and I avoid touching people if I know they are feeling unwell. That said,  my concessions to my immunosuppression has their limits. I am sensible yes, but I refuse to walk round with a surgical mask and gloves on.   
My theory on this subject is that exposure to some germs is good for my repertoire.  Also, I want to live a reasonable life and living in constant fear of the common cold is  not normal, and seriously, how dangerous can a stranger’s cough be? 

The answer to that question is, of course is ‘quite dangerous’. I have discovered this the hard way. To my embarrassment and severe frustration, I have recently discovered that despite not being able to feel it, smell it or even notice it, my immune system can bring my life to a standstill. What started off as a cold, has brought my life to a standstill. 

Approximately 21 days ago, I developed a light sniffle and a sore throat. Two days after that, I experienced a few days of sickness and diarrhoea. The latter are not out of my ordinary, so I assumed it would pass soon enough. A fortnight ago, with my bowel seemingly back to normal, I spent my weekend suffering from lethargy, a loss of appetite and what appeared to be a throat full of knives. Every day, I would convince myself that I was improving. 

After 10 days of feeling slightly rotten and once again, spending too much time in bed,  I thought I best inform the Medically Trained People. The symptoms I had, could have been an infection or Graft vs Host Disease, so I thought it was about time I was sensible and got a second opinion. I loathed the idea of a second opinion. If I did not have myeloma and if I had not had three transplants, I could have just moaned about feeling poorly until I did not. Maybe I could have talked my friends through the varying colours of my sputum on Facebook. I would not have had to go to the hospital for tests…

The following day however, I did just that and took myself to St Bartholomew’s Hospital for tests, because I do have myeloma. Upon arrival,  I christened the building with some red tinged vomit and was informed I had a temperature of  38.5. I was poked, prodded, x-rayed and I was told that I was going to have to be admitted and given intravenous antibiotics as a precaution. I thought it was all a complete overreaction, so I bartered with them. I got the Medically Trained People to let me go home, after I had some fluids and antibiotics, and all but pinky swore that I would come back over the weekend if it got worse. I promised them that I was a very sensible person and I was most definitely capable of looking after myself…

… It turns out, I am a liar.

That Friday evening, I got home shortly after 18.00hrs, climbed into my pyjamas and then my bed and I did not get out again until Monday morning. The only times I did venture out of my pit was to run to my bathroom and produce some vomit that contained blood. I drank and ate nothing. On the Saturday, the hospital called and told me one of my tests had come back and I had Influenza B. Proper flu. As I had the ‘official’ flu, I had to come in the next day to collect some medication. Sunday morning came and I could not get out of bed. Housemate said it was pathetic. I did not need him to tell me I was being pathetic. I really could not get out of bed. Who knew the flu could completely floor me? I have had transplants, I should have been made of sterner stuff than that. 

It’s just so ordinary.

😷

By the Monday morning, I had drunk less than a litre of water since Friday. I was groaning. Literally groaning. What had started out as something small, something I did not want to make a fuss over, had somehow become something that required actual, real life, medical attention. Seeing that simply willing myself to improve was no longer working, with Housemate in tow, I made my way back to St Bart’s. I had an appointment I failed to brush my hair for, let alone source lipstick for. I did not not look my best. The lack of hydration had caused my lips to crack and the inside of my mouth to bleed.

To cut a short story even longer, we went on to see a Medically Trained Person who looked at me and simply said “oh, Emma” and promptly told me that I was going to be admitted. I had lost over a stone in a fortnight. I was transferred to a private room on a ward. And in that room I stayed for four days. I vomited more blood, I had several bags of fluids and I rediscovered the joy of Mackie’s vanilla ice cream after the anti sickness tablets had kicked in.

  
Apparently, it was necessary for me to be kept in isolation. I did not see a member of staff who was not wearing a surgical mask for the length of my stay. The flu had not only taken me down, it had heightened all my GVHD symptoms. It meant more drugs, more waiting and more lost days. Wasted time, spent alone in a hospital bed. Bar an hour a day, my only company was my laptop and the faceless staff who interrupted my sleep.

I have been out of hospital for five days now, and I am still a pathetic little weakling. I am still embarrassed and angry that I have a body that required hospital admittance for the flu. I resent the fact that even though I am out of hospital, I have been told it is going to take a few more weeks for the infection to go. 

To put my frustration into some sort of perspective, Big Sister experienced a similar illness to me at the same time. She was coughing and sleeping and generally feeling unwell. Sound familiar? Like most otherwise healthy people, she went to her GP and was prescribed a course of antibiotics and was sent on her merry way. I’m jealous that that was her experience compared to mine. In addition to my hospital stay, I required two chest x-Rays, daily blood tests, multiple bags of fluids, nasal and oral swabs, two different types of antibiotics, an inhaler, thrice daily nebulisers, steroids and ice cubes.

😷

It’s experience right? Hospitalisation for the flu will one day be a funny anecdote I can tell my friends’ kids about. When I tell it, I’ll leave out the part/s about me feeling sorry for myself that at the age of 31, I am considered a vulnerable person who cannot tend to herself. In the future, my story will also include something about being lucky that the NHS cared for me and, with acknowledgment to my stupid weakened immune system, an awareness that it could have been much worse. There are many people, far braver than I, fighting seemingly unrelated side effects of cancer as I type and you read. 

We might be lucky enough to get a remission, but, having ‘cancer’ never reallygoes away. 

😷

EJB x

Please note that real flu and a cold/other bugs are very different beasts. The memory is raw, liken  them in my presence at your own risk… My cousin said they always say the difference between real flu and a cold is whether you would get up to pick up a Β£50 note! Take that with you.

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Rallying

Yesterday marked the end of five days of pre transplant conditioning. That would be, five whole days of travelling to and from St Bart’s for chemotherapy. Since the fist clenching, swear word swallowing experience of Day One’ (Day-6), I have endeavoured to be on my best behaviour when on the ward, experiencing the medical equivalent of seeing Wagner’s longest work without subtitles with an innate hatred of opera. 

I concluded that if I cannot always  service with a smile, I should be the one delivering said smile. It is something that is much easily willed than done, especially as the chemotherapy is having a negative, cumulative impact on every aspect of my body. My brain, my muscles, my bowel and my bladder feels like they have been assaulted by a BB gun and multiple sacks of potatoes. Thus, finding the energy to smile, let alone speak, does not come as easily to me as it usually, all so naturally does.

I have been attempting to rally myself into a state of positivity, but for me, this last five days at least, it is not something I have been able to do all on my lonesome. I have needed assistance. Poor Mamma Jones has been on the other end of the phone wishing she was in London. I even admitted to my friends that I was in need of assistance. Assistance being in the form company to make the hours in the clinic more bearable. Assistance to remind me that this is only a temporary measure, that won’t go on forever. Special kudos has to go out to Housemate who fought through what I can only imagine was a horrific hangover on Saturday to be at the hospital for 9am, returning home at 5pm. Yesterday, he even did my dishes, which is unheard of. 

In all honesty, this cannot be done alone. Yesterday, I forgot to brush my teeth, which I am sure was a pleasure for the Medically Trained People who had to get remotely close to my face. Even with a support network, the treatment is isolating.  If I feel like this now, who the heck knows how I will feel in a few months time?

In terms of the immediate side effects,   the hiccups have been plaguing me since yesterday, and when one looks like this post chemo, imagine what I look like mid multiple jerk:

 
Today, I have a ‘day off’, but this still involves heading into the hospital for blood tests. Big Sister also arrives in the Big Smoke for her part of the process today, so it seems only fair that I meet her to express some of the inexpressable gratifitude. 

Prior to last Thursday, I was told that I would find the conditioning relatively easy in comparison to my previous treatments. I wouldn’t go out and out and call this a white lie, I just think it’s difficult to be comparative to my past experiences when my current experience is so foul.  I might have fouled myself twice in 2013, but that is no consolation when I cannot take my morning medication without vomiting or distinguish whether ‘consolation’ is the correct word to use here over ‘consolidation’. 

We all know how much I love to talk about my toilet issues, so imagine the complex situation I found myself in on Monday night, four days without passing a number 2 whilst experiencing a cystitis-like pain from the cyclophosphamide. Every effort to unleash the stool, angered the other thing. It was a pain that could only be muted by taking two diazepam to permit a long sleep. It was a temporary reprieve, for it was still an issue present upon waking, but, hey, at least I got some sleep. Last night on the other hand, my sleep was interrupted five times to pass water because of the cyclophosphamide. 

The last five days have been relentless. With an auto, it’s one day of treatment than the transplant. The horrible side effects hit you later. I will probably be thankful when what experienced in 2013 doesn’t hit me, but right now, I just really, really want a week in my bed to recover. I know I am a good few weeks away from this luxury. 

So, in the meantime, I just have to rally. Rally and remember the key words that ‘This Soon Time Pass’.

  
EJB x

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Day+4

Please not this blog was written yesterday. Today is Day+5, but really, who is counting? 

I have to be blunt. This sitting around and waiting to get sick, is nonsense. It is a nonsense that is really is getting on my tits. That’s right, on my tits. I am aware that that statement is somewhat crude, but I do not want to use my very limited energy coming up with a more palatable way to express my frustration. Waiting to be deemed ill enough to be admitted to hospital is beyond tiresome. Knowing what that illness feels and looks like, and waiting for it to happen, is not something I would wish on my top ten list of worst enemies. It has to get worse before I can feel better. I cannot compartmentalise this yet. I cannot cross the bridge yet.

Today is Day + 4, the day I was admitted to hospital during the last transplant. I did not envisage outdoing my previous milestone. I planned, and I prepared, and I convinced myself that the treatment would take me down much quicker than it did last time… I am quickly trying to readjust my thinking. It’s back to the drawing board. It’s difficult to do that when every minute of every hour of every day of this last five days, I have waited with pure dread for the unforgivable mucotitus. The chickens have not hatched.

At this point during the last transplant, I felt worse than I currently feel. My bowel had already started to fill a reservoir, my stomach was cramping, I had not eaten for 24 hours and I had a fever. Today, I feel quite nauseous, but the three anti sickness pills taken three times a day, seem to be doing their job and I managed to nearly finish my lunch earlier. An outsider would be forgiven for thinking it was a piece of cake, but to the feeling of almost constant near vomit, add the need for 12-16 hours of sleep every day since Friday, burping after every sip of water, stiff joints and the occasional sweaty brow; and a poorly Emma you make. Just not poorly enough. What I experience now, I would  describe as ‘horrible’, but it is nothing compared to what is to come and I feel that most keenly. Am I allow to seek sympathy now when I know I am going to need so much more in a few days, or am I just crying wolf? 

There is a lady in the hotel who had her transplant on the same day as me, and she is waiting to become unwell  just like me. However, I am jealous of her, because unlike me, she has not experienced the ‘feeling unwell’ before. It’s ridiculous, but I think I found not knowing exactly what to expect much easier than I have the last 72 hours of remembering. I would be the first to admit that I do not recall how accurately I have remembered it all. Accurate or not, my current anxiety is real

As things currently stand, my White Blood Count and Neutrophils both stand above 2, I do not have a temperature, my mouth feels woolly and my stools are non-existent. I am eating, but I am unable to drink more than a litre a day. I am more than under the weather. 

I am whinging. I know I am whinging. I cannot help it. It’s the fatigue and the overwhelming fear that I will not be strong enough to manage the pain and inflammation of my body’s mucous membrane. That my friends, is the long and short of it.

Fortunately for me, I prepared for such moments of self doubt. There is the obvious response to my questions of coping and getting through it all, stolen from a sports brand, along the lines of just doing it.

However, when I feel like my ego needs a bit of stroking, I take my mind back to February 2015. “Hello a birthday weekend away with friends in February 2015”, I say. A weekend when, in spite of being at the end of a  very long course of debilitating treatment, and thus, worrying of nothing but my ability to stay awake, I defied all my expectations and stayed awake. I saw 05:00hrs for reasons other than my back hurting and steroids . It was hard work and required some preparation, but I did it.  I was so pleased and surprised with my three day performance, that I, rather delicately declared that I had “pulled some energy out of my arse”.

A few days after that, I was asked how I thought I was going to get through my transplant, and I responded with “I will just have to pull something out of my arse, that is what I have done so far and it has worked.”

So, can I pull something out of my arse yet?

EJB x

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My Little Secret

As I emerge from yet another broken night’s sleep, I think it is high time I revealed a little secret in the hope that I can have a full night’s sleep tonight…

Dum. Dum. Dum.

In no way, whatsoever, am I coping with my transplant plans. You can exhale now. I do not feel ‘okay’, which if you did not know is my default, do not alarm people adjective for my health and my feelings. I find anything below the Okay Line, all rather embarrassing and not very English. I do not think I can hold my stiff upper lip anymore, and in admitting that, I suspect I am letting some people down.

I might me as big as one, but I am currently, not as strong as an ox.

If you are fortunate enough to be the handful of people I have felt well enough to talk to over the last week, I may have mentioned the subject and smiled. My voice may have even broken as I succeeded to hold back the weight of conflicting emotion. You may have left the conversation thinking that some of my fears had been listened to and that as a consequence I felt a better. I may have felt a little better, but then we have only really scraped surface. I do not know how to present the truth to people, to my Network.

The truth is, at this moment in time, as I am due to spend the next x weeks preparing for y months of illness and the unknown, all I can think is ‘can I do this?’ Then, when I am done considering that and everything than encompasses, I ask myself ‘is it going to be worth it?’ If I have allowed the brain to truly spiral into self pity, the latter question is accompanied by the sub question, ‘what are you even going to be left with?’

Reading my questions, I would like to think that your answers would be ‘yes, yes and a lot’. I keep telling myself that these should be my answers. There is something else in my head however, on repeat, with a persistent beat, saying ‘this is all too much, Emma‘. Too, too much.

On a practical level, I can discuss the x and y. By that, I can talk to somebody about how I have purchased new pyjamas, when I am going to shave my head, my concerns about where my PICC line is going to be in relation to the toilet door in my hospital rooms and whether it is possible to magically speed up my iPad so I can have meaningful entertainment in the hospitals. That’s the limit though, because everything else is a black hole of uncertainties of terrifying gargantuan proportions.*

In a much needed counselling session last week, in answer to my first question, I almost satisfied myself with the answer, ‘I’m just going to have to pull something really big out of my arse’. Even in the most emotional of circumstances, I still manage to find a way with words. My reasoning was that I have managed to hold myself together for over two years of near constant treatment, by flying, very slowly, by the seat of my pants.

My ability to create magic from my bottom, I believe will be greatly aided if I can use my x weeks productively, to see my Support Network, do things that I will not be able to enjoy for the rest of 2015 and complete my annual Oscar’s Challenge.

There is a problem with this plan in addition to my financial constraints, and it is a problem that is adding to my current woes. The problem is called fatigue. After 28 weeks of ongoing treatment, my body is coping less well with the thing they call energy. Not only that, but my new treatment regime, which involves the return of Cilit Bang and coordinated weekly doses of steroids, means that I have even less energy to do the things I would like to do. I have become most flaky in my social planning, for, I am finding there is just a lot of things I cannot do. On Saturday for example, I was out of my flat for a total of 5 hours, which included lunch, the cinema and a trip around Dalston. At the end of that, the only place I was going was to my bed to feel sorry for myself.

My head does not need the additional hurdle of fatigue at this stage. Last night, as I sat on my bed for 20 minutes working up the energy to put on my pyjamas, brush my teeth and give myself my G-CSF injection, I thought that the year of fatigue had already started. I am already struggling and it will go down before it goes up. It is an extremely scary thought.

Scarier still is what is to come when I head into my transplants. As I am one to blow my own trumpet, last week I summed it up well when I said that the best case scenario is that I am incredibly ill for a year. I might have even put that in my last blog, I cannot remember, in which case I said it a fortnight ago. I am going to stop, lie and watch whilst everybody around me continues to live. I obviously want them all to live, but that does make me feel behind. Immature. I try not to think about how much of my life has been put on pause with my treatment, but I would be naive to not realise how magnified I am going to find this reality when I am bed bound for such a long period of time.

Fingers crossed I will emerge well from my procedures, but that will come at a cost. I will have no money, I probably will not have a job and I will still be single and not so ready to mingle. I know myself well enough to realise at some (many) point(s) over the year I’ll be jealous and angry that others will be experiencing what I wanted for myself. I do not know how I will deal with this and I that is a concern. I am scared of driving people away. Mamma Jones recently described me during my first transplant as a ‘brat’. That was a revelation because I thought I was an angel.

When I ponder whether it’ll all be worth it in the end, my fear is that My Myeloma would have left me a shell of a human being with little relation to who I was up to 17 August 2012. I do not know what I will have to offer. This is a shocker, but myeloma has most certainly dented my self esteem. Even now, I am haunted by the words a friend said to me post my first transplant in October 2013. ‘Everybody is bored of your myeloma. You need to understand they need a break from it and thus you’.

Imagine that, huh? I know for a fact I am not going to be an easy person as things get going (seeing quote from Mamma Jones), and I fear that those kind words will become truer and truer as the year progresses. How far with loyalty get me? I have already seen some of this specific concern reflected in my relapse. I cannot do many a thing these days and thus less people feature in my life as a consequence of that. When I am high as a kite on morphine or after spending a third day without speaking to anybody but my mum, imagine how those thoughts will play. Actually, you do not have to imagine, I have imagined it for you and I am trying my hardest to find a way for me to not let it happen.

Of course, I have my fears about the worst case scenario too. I am still superstitious, trying to be brave and limit what can be perceived as complaint, so you’ll just have to read between the lines on what I do not want to happen.

I was surprised earlier in the week that somebody else was surprised when I told them that I have recently become reacquainted with the uncontrollable tears. They asked me why I was upset… I really hope the cat is out of the bag now.

And quiver.

Now, if people can make me feel loved without making me feel awkward or like you are taking pity on me, it would be much appreciated. Don’t worry, I can talk about things that are not about myeloma, in case you were on the cusp of getting bored. I think.

EJB x

* In case you were wondering, I am working on increasing my limits. I’m searching for some metaphorical tools. Do you know where I can find them?

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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.

πŸŽ„πŸŽ„πŸŽ„

EJB x

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That Friday Feeling

That goodness it is Friday. Such is my relief that I have made it to Friday, I will repeat my gratitude for it finally being Friday. I have wanted it to be Friday since Saturday night, and what do you know? The day has finally arrived.

I am thankful it is Friday not because I have had an arduous week at work and I am getting ready to let off some much needed steam over my weekend break, I am thankful it is a Friday because I have had an arduous week in my bed and now, I no longer have to be in there. I knew two weeks ago, as my last crash drew to a close, that I would be unwell this week. I opt to take all my steroids in one go, and I know that the consequences of that is an empty brain and a weak body. It is how my cookie crumbles. Even though I know that a massive cloud will be over me for up to a week and I can prepare for it, it is still an incredibly hard thing to do, and around Monday or Tuesday (days 5 and 6) there will be a point where I want it to end and it is for that reason that I am glad it is Friday. I have another one in the bag, it’s almost a dignified bag if you discount all the talk of poo in my flat this week. I no longer have to worry about how and if I am going to manage my crash. I am glad it is Friday because this crash did not break me. I will have the same goal in three weeks time.

On my new treatment, I have now had three steroid crashes. The drugs remove the brain capacity for me to be able to tell you how many days in bed this equates to. I can tell you that between Sunday evening and Wednesday morning of this week, I existed in the confounds of my flat only, with just a pleasant man and his dog for company. Had I not had to attend the hospital on Wednesday, I wager I could have added a day to that tally. With the three crashes in six weeks, and the ten I had in My Myeloma’s first incarnation, one could say I am an old pro when it comes to how I should manage them. I mean one could say that, whether it is actually true is a different matter entirely. I am being more organised, but the truth is, I get through it on a wing and a prayer. To me, a successful crash is one where I do not allow myself to feel too sorry for my situation. Using that barometer, this crash has been a moderate success.

For the block of days every cycle when my mouth always tastes like tin, the skin around my neck and back feels constantly bruised, I cannot follow a simple conversation, the need but not necessarily act of sleep is my constant companion, my mood has been altered to such a point that the threat of paranoid induced physical violence is never far away nor is the dizzy spell and I am so constipated that a suppository just will not do, I do seem to be developing some key skills and tools to keep my frown upside down. The crash situation is always precarious, but I have found that these few simple things make it much more bearable;

β€’ Where possible, I should look after myself, it may not be rocket science but this crash is my job and I want to get an exceeded

β€’ A fully stocked fridge and freezer, specifically with items that can be reheated or prepared in five minutes

β€’ Fresh fruit ice lollies, sour drinks , Starbursts and anything else that will temporarily remove the taste of metal with a hint of vomit flavoured halitosis

β€’ The shower, never underestimate the power of a clean peach

β€’ Getting dressed and moving, even for an hour, from my bed to the sofa is the equivalent of an exhibition and a trip to the theatre during crash week

β€’ Having a Mamma Jones and a Big Sister on the other end of the telephone to chat my gibberish with me

β€’ Colin and Bruce.

β€’ Films from my childhood that have been seen a morbidly obese amount of times

β€’ A tidy and clean(ish) flat

β€’ Funny anecdotes from the outside world, or failing that, people letting me know that they know I am running a metaphorical marathon

β€’ In this heat, a fan permanently directed at the body

β€’ Remembering that it is just da ‘roids and in reality I do not hate myself and everybody else

β€’ The knowledge that it too shall pass and I can make it until Friday

My fingers are crossed that these tactics will work in cycle three. One thing is for sure, in just over three weeks time, I will once again be wishing it were a Friday.

EJB x

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The Sniffles

Newsflash

HOT OFF THE PRESSES

Stop what you are doing right now

I have a cold. I am talking bogies, phlegm, sneezes and a lost voice, sort of cold. Well, I do not have it now, I had it two weeks ago, but I did not think to tell you about it at the time because it as just a cold, and unless you are an attention seeking weakling, a cold is not a big deal. Everything about my cold felt familiar, which is to be expected given the fact that I am 29 years old and I thus have been around bugs and other peoples’s snot for 29 years. You know what I am talking about, the colds, they are pretty common.

With this cold, my first cold post transplant, I did not want to create a fuss, why would I? After all the side effects I have experienced, I actually find the symptoms of a cold quite pleasant, for they do not distinguish my body from everybody else’s the way everything else does. You know what I experienced with it, because you have had one too, there is nothing sinister about a blocked nose and a croaky voice is super sexy, unless you cough something up with it.

In my mind, having a cold was good, I have longed stopped washing my hands when I touch a door that is not in the compound. Opening up my body to some lesser bugs, builds up my immune system, right? I do not want to live in a protective bubble. I am far too lazy and far too restless in equal measure.

Even though I thought my cold was no big deal, from others, I sensed panic. Oh my gawd, beware of the snot, she has cancerrrrr and a compromised immune system! At first I was told to monitor it (I went and sat in rooms full of strangers and air conditioning instead), then I had to postpone my counselling because other cancer patients do not like colds, and then, I got quarantined and put on antibiotics as a precaution. Normal people don’t get that, they get Lemsip or the supermarket equivalent if they are feeling thrifty. I experienced vigilance.

So the moral of this story is that I cannot just have a cold. I cannot suffer in silence. I have to ring a bell and wear a sandwich board, and winter is coming…. Sniff, sniff.

EJB x

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Precautionary Measures

As I try and get on with the meaning of life, I am ever aware of the fact that I now have to take certain measures to ensure that I am not struck down with hysterical diarrhoea again or a bad bug of bad bugs. Post transplant, I am ever aware that I have to be cautious when it comes to all things germ related. I can confirm that this is caution is tedious. Everywhere I look, everywhere I go and everything I do represents potential danger. So imagine what it is like in London.

If I am not careful, I could develop a complex. If I am not careful, I could experience something that is less than pleasant. It’s a catch 22.

The caution is not from the unexpected (https://ejbones.wordpress.com/2013/02/12/hand-washing/), a stem cell transplant does compromise one’s immune system after all. Everything I read prior to my transplant told me that my immune system is now pants.

Wash, wash, wash, they said. Be clean, they said. Avoid disease, they said.

* Wash your your hands wherever you may go, before you do anything and after you have done it
* Do not put anything dirty in your mouth
* Do not go abroad for 12 months
* Only eat food that is dead of all things, not just the obvious
* Do not eat reheated food
* Do not let somebody sneeze into your mouth
* Do not lick the seat of a public toilet

The list goes on and on of course. And on. Fortunately for me, and I am trusting their judgement on this, my Medically Trained People are not as rigid as my Internet research implied. I am back on the raw cherry tomatoes for example and that is a marvellous thing. If I think that is marvellous, imagine what I thought when they said I could go abroad, not too far, three months after my transplant date. On this subject, I am playing it by ear.

I do not know how much of a threat coughs and sneezes actually are to me. My bloods are back to normal, but I swear at ten points in my recent history, I was told to avoid the coughs and sneezes for they spread diseases, but then just the other day, I was told that I was being needlessly cautious.

The dilemma!

There is a part if me that wants to be overly zealous, and live in a plastic bubble of cleanliness forever and ever and ever, and who disinfects after and during every encounter with Bruce. The other part of me wants to stick two fat fingers up and myeloma and my transplant and suck down a dozen oysters in rebellion.

In reality, I am doing neither.

I cannot help but see a threat to my health in almost everything now. As a thumb sucker, this new approach to cleanliness, is cumbersome to say the least. I stroke the dogs, I was my hands. I come in from the outside, I was my hands. I just lurve washing my hands. I carry antibacterial hand wash in my handbag. I really do. I draw the line at the face mask, despite having some hidden in the mess that is my bedroom,

If it was just my hands, that would be one thing, but it is not. Germs do not restrict themselves to hands. In my life to date, I have very much thought that exposure to germs is a good thing. I have not licked any toilet seats, but when it comes to food, for example, I have always thought that a little bit of germ exposure builds the immune system. Unless I was catering for somebody, I would never was my fruit or veg, well, apart from the leek, for those things are muddy. Now, if I want a strawberry or currently, the overly priced fancy cherry tomato, I have to wash them and dry them to eat them. My current preferred method is the sieve. A sieve? I just want to eat them. I have never understood people who wash an apple and then dry it in a hand towel. I understand now, they had all undergone immune compromised treatment as well.

I may have accidentally tasted a few prawns a weeks so ago, and reheated a soup, and ate some cold meat, but prior to doing this I did wash my hands. A day later, I experienced some unpleasantness from the bowel. Was it just a coincidence or did my lack of willpower let me down? We will never know, but the paranoia ruined the experience of eating these things in the first place. The propaganda worked. I was suitable scared and now for the foreseeable future, I will have to be sensible. Yawn in my face why don’t you.

More excitement is to come. I have to have a flu jab. The question now is, when does this have to stop? Can I have a follow up question? Okay. When is enough, enough?

And if you have managed to reach the bottom of this blog, I think the word count alone is a testament to my anxiety, either that or I need an editor… I clearly am a sucker for the propaganda.

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As for now, be clean little ones. Be clean.

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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0.01

I spent all day yesterday in bed. I did not shower. Filthy bitch. There were many reasons why I did not leave my bed yesterday and keep up with my personal hygiene, all of them, rather predictably, stem from stems. Yesterday, despite the fourteen episodes of slime and my cramps which felt like toddlers were doing the Macarena in my stomach, I felt like that side of things, my bodily fluids, are improving. It is hard to full decipher whether this is an accurate assessment, or whether it is an attempt by me to fool myself into thinking I am getting better.

That said, my fatigue don’t lie. By now, we have such a relationship, where I am merely passive aggressive with him, when he comes in expecting a clean house, dinner and the mental capacity to jigsaw. There is nothing else new in my bag of myeloma goodies, unless you count the sore throat, which worsened after I foolishly drank some water in my sleep yesterday morning.

In spite of all of this tomfoolery, during rounds yesterday, something exciting happened. It’s not actually exciting, it is just words, but to me, they were magic words because it meant that there is starting to be a foundation to my hope that this will be over soon. Dare I say, maybe even a scientific basis to it. The Senior Medically Trained Person told me that I was going toturn a corner in the next day or so. Tea! She did add that this would not result in me feeling better instantly, but I will feel an improvement at least. Tea! Please let it mean tea! Oh bugger, what does an improvement look like?

I occasionally thought about this between my snoozes and cramps yesterday. Like rock bottom was not tangible, neither is an improvement. It’s more fun to look forward to though. . The waiting again, is another thing that would frustrate, were I not on a healthy dose of opiates.

If I want something in my pocket, some proof, I could use that fact yesterday, I had a minuscule, as in, means very little, neutrophil reading of 0.01. Every other day this week, it has been less than that, as in, no reading. It’s a tiny step forward, but one that put a smile on my greasy face regardless.

My fingers are firmly crossed that today sees an improvement somewhere. Come on. My fingers are also crossed for a shower for I need to erm, remove some of my hair before it all by itself.

EJB x

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