Category Archives: Drugs

Mashed

Hello there and welcome to Part I of, let’s say, two blogs about my brain function. I assume it’ll be in two parts; I have not written them yet.

The first post will be something of a downer as I describe what it is like to exist with constant Chemo Brain. As a romcom sort of girl however, I intend to pick things back up in Part II with an inspirational story of how I manage to fine some respite from my brain’s drug induced default position of blurry shapes.

So, back to the downer that is Part I…

I need to be clear about something that is commonly misunderstood. Fatigue as I know it now, is not just limited to tiredness. Of course tiredness is a big part of it, but there is so much more to it. So much more that is hidden from your view.

Essentially, my brain is straining and I know it is straining. In the last two months, as my fatigue has increased, so too has my inability to concentrate, think, remember and reason. Don’t get me wrong, I am not sitting at home all day long unable to tie my shoe laces. That’s a bad example, for I actually cannot do up my show laces, but that is not because I do not know how, it’s because my back forbids it. My recent days and weeks mostly blur into one big lump, where time passes quickly, with a noticeable lack of cognitive brain function and imagination. My time passes quickly and yet I do not know how, nor can I recall any use of something I once knew as ‘imagination’. I miss it.

This blog is a good example of my inability to think. When this all started, as much as I noticed that the drugs were frying my brain, I could still form sentences that did not always include ‘of course’, ‘so’ and ‘obviously’. Writing was easy. It’s not easy for me now. I like to think that I am rather witty, but realistically, after a glance through my most recent posts, my wit may well be in my past.

Believing something is better than nothing, I will continue to stick to the same old vocabulary to keep people abreast of My Myeloma developments, even though I know the content is becoming dryer than my skin post radiotherapy. I sit down to write a blog and more often than not, a blankness takes over and what I want to say cannot be said because the words just bounces around my head. If I can overcome that particular hurdle, I then find that the act of writing things down, something that remains important to my overall wellbeing, uses up my daily thought allowance. I blame this for my current, simmering level of madness. That is my story and I am sticking to it.

Waking up one day and realising that your ability to communicate is not what it once was, is not something to relish nor welcome.

After some thought, I still view my treatment as a means to an end, but the truth is, my treatment comes at a big cost that few people recognise and I can quantify. All I know for certain is that I cannot help my boringness, I plead with thee.

I watched a film last weekend, I will not tell you the name of it because I am about to give away a big part of the plot. One of the characters is accused of running somebody over with his car and his defence is that he cannot remember doing it. Why you wonder? The answer is Chemo Brain. An actor playing a doctor actually says ‘Chemo Brain’. Now, I have no intention of running somebody over in a car, I cannot look at my blind spot anyway, but it made me think, slowly, about the losses I have had to deal with on my current treatment… I do not think that the plot development I mentioned is implausible.

I am backing this blog up with examples, silly examples maybe, but examples all the same, so that you do not think I am exaggerating or feeling overly maudlin. When I say that my days blur into one, and that I have a limited concept of time, that is not an exaggeration. Big Sister told me off a few days ago because I had not spoken to her for a week. If somebody had asked me about this prior to our conversation, I would have said that the last time we spoke was a mere few days before the question came ‘where have you been?’. The answer of course to that question was ‘I don’t know’.

Last Monday, I attended a two hour lecture on the Freudian concepts of Eros and Thanatos in modern cinema. Cultural for sure. The following day, I knew that Thanatos meant death, but I could not remember the word. I had to look it up five times before it stuck and by Wednesday I had forgotten the word again. Right now, if I think really hard, I can remember the titles of three of the six films discussed.

I used to have a good short term memory. Past tense. My brain now seems to be built for one man shows because I cannot remember multiple names in one go. A few weeks ago I watched a film in the afternoon and come 20:00hrs, I had no recollection of what the film was. In my defence, the film was terrible.

If modern technology did not exist, if I did not walk around with constant access to Google in my pocket, I would be a word beginning with ‘f’ and ending in ‘d’. I am constantly making notes and scrolling through my messages to see what I have said to the various people in my life. I live in a constant state of fear that all my conversations are the same and people are just too polite to tell me that we have already spoken about what it is we are speaking about the last time we spoke.

There is an obvious side effect to the side effect of which I speak. It’s called monotony. Do you know what monotony does? It makes a person boring. Dare I say it, it makes a person tedious. My worry? It has made me tedious. Of course, nobody will say that I am a god awful bore, at least not to my face, but they can and will think it. My phone records would probably back this up.

A month ago a friend of mine told me off for asking so many questions in conversation. It plagued me for a week or so, until I realised that it is something I do now to firstly enable me to actively participate in a conversation. Secondly, having thought about and asked a question, I am more likely to remember the answer. It is a far from ideal way of engaging.

It has, in my brief myeloma voyage, never been as severe for such a long period of time. Reading has been a constant difficultly and the chances of following the plot of Game of Thrones were significantly reduced the first day I took morphine, but there is so much more to it now. I want to be able to articulate myself. I want to remember to reply to messages and phone calls. To allow the former, I would be greatly assisted in knowing how long a day is. And finally, I would very much enjoy recalling information mid conversation without feeling the need for a celebratory fist pump.

As Part I draws to a close and on the eve of two transplants, my main questions are, how much worse can it get and how many people will still be around at the end of it?

EJB x

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Feel The Burn

On the first day of radiotherapy, way back when on 21 August, I was told that the treatment may cause some ‘skin irritation’. I was also told of this ‘skin irritation’ when I went in the week before my treatment starting for my planning and when I met with the Medically Trained Person who decided to give me the treatment in the first place. I did not heed the warnings. I mean really, what is a bit of dry skin when one faces the daily challenge of bone pain, whilst taking a hefty dose of chemotherapies?

On 21 August I was given a small tube of aqueous cream to apply to my back. At the time, I thought that the request was quite laughable because I could not touch the area of my back where the cream was intended. Reclaiming the ability to touch my lower back without wincing was one of the reasons I was there in the first place. I got the impression that this was lost on the radiographers. Given this slight practical issue, which I was not going to ask somebody else to do for me, and the fact that I did not experience any ‘skin irritation’ when I had radiotherapy in October 2012, I took an educated risk and decided not to apply the cream. As some of you will be aware, I spent much of the radiotherapy era vomiting and feeling less than sexually desirable, so I had little energy to consider whether the skin on my back was turning to leather.

You might have guessed the outcome of this already, but with the beauty of hindsight, I can say that my decision was a mistake.

I made a big mistake. It is an itchy, red, sore and flakey mistake, covering my lumbar region, which decided to reveal itself four weeks after my treatment ended.

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See?

It revealed itself at a time when I could not seek immediate medical assistance, so I wisely decided to self diagnose the affliction on the Internet . After a quick panic stricken detour via images of plasmacytoma, I concluded that I had a radiotherapy burn made worse by somebody who shall remain nameless, accidentally scratching the wound in question. Despite my sound medical knowledge, as soon as was practical, I sought medical advice. That was yesterday.

Yesterday, contrary to my informed self diagnosis, I was asked to seek immediate medical intervention because the symptoms sounded like shingles. To keep you up to speed on what one should avoid post transplant, a diagnosis of shingles or it’s sister chicken pox are right up there in the panic inducing bracket.

I consequentially spent two hours yesterday feeling like a leper. My visit to the hospital had to be prearranged so I could be taken straight to a private room to protect the ‘transplant patients’. I wanted to stamp my feet a little at this statement and tell the Medically Trained Person who arranged my visit that I too was a transplant patient and was all to aware of how risky shingles could be to others as well as myself. I went to the cinema instead.

So I did not alarm anybody, as in other patients and their family members waiting patiently for treatment, I had to whisper twice in reception before I was quarantined into a dark room watching Jeremy Kyle, desperate for a cup of water because I put too much chilli sauce on my steamed bun prior to my arrival at the hospital. For this reason and my potentially contagious state, I desperately tried to avoid kissing a patient’s wife but failed. It was most stressful. Thankfully, after a quick inspection, a Medically Trained Person concluded that I do not have the shingles. I have a radiotherapy burn made worse by somebody who shall remain nameless accidentally scratching it. The area was described as ‘angry’.

It was an experience almost as exciting as the time they thought I had herpes.

An hour later, I left the building with antihistamines (aka the best sleeping pill ever), menthol aqueous cream and emergency antibiotics should my back become infected. I still cannot fully reach the wound without feeling like my back will snap, so I suspect for the next week at least, I’ll be sporting a permanent grease stain and dirtying my bed sheets.

The lesson I take from this latest myeloma treat is that just when I thought I knew everything there was to know and had experienced everything I could experience, something else comes and bites me almost in my arse. And the panic ensued…

EJB x

P.S. I do not understand why the aqueous cream has to be menthol flavoured. It’s zingy.

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Dog Poo Bags

I was told to expect a gippy tummy with my radiotherapy. I have mentioned this before. I interpreted the side effect to mean runny poo, maybe lots of poop, but regardless, I took gippy tummy to be bowel based activity. I was wrong. The zap lasting but a few minutes has actually resulted in the vomit. By my standards, a lot of vomit. The sound of which, scared the dog yesterday.

Bar my transplant, I have been fortunate enough in my treatment to date, to have mostly avoided the act of physical sick ness. Nausea sure, we’re old pals, but it has been something that has been manageable with a few pills here and there. Post transplant, the nausea was something that occurred more than I would have liked, but again, with the exception of a few instances, one memorable one in Mamma Jones’ car, I have been able to avoid something that I have traditionally associated with excessive drinking. Something that is preventable.

I have had five radiotherapy sessions, with my last session finishing a mere hour ago. So far, I have been sick after three of them. A quick, paranoia fuelled Google search yesterday revealed that this is a common side effect of radiotherapy of the abdomen area. As my L1-L5 are the things being targeted, I calculated that it is quite likely that my abdomen may be experiencing a little bit of the radioactive spray back.

Today, because I found yesterday rather difficult and my response to it somewhat pathetic, I came prepared. I have only eaten a pot of yogurt with linseed and a packet of Quavers. One could say the rather tasty New York Deli sandwich from Benugo was wasted on me yesterday. I only had this morning’s food because steroids require food in my stomach. Furthermore, in addition to some strong anti-sickness pills last night and more this morning, in my handbag, you would currently discover three doggie poo bags*. I figured that due to their normal function, they are designed without holes to avoid embarrassing and unpleasant instances of leakage. The bags are an additional contingency because I do not get a great deal of warning and I am currently on a train travelling slightly up the East Coast Mainline. I may have experienced projectile vomiting in the British Film Institute last week, but I do fear doing it in the first class carriage (purchased with disabled railcard discount) would be rather embarrassing and most unfortunate for those travelling on to Glasgow.

The good news is that the radiotherapy ended today. The bad news is that I was told that the side effects, the other being fatigue, could last for another fortnight. Do you know what I say to that? A means to an end my friend. A means to an end.

EJB x

* To ensure that this blog was factually accurate, I again visited the world’s favourite Internet search engine and I discovered there are multiple names given to the doggie poo bags. It would appear that it would be far too complicated to call them a ‘dog poo bag’. From what I can see, ‘doggie poo bag’, ‘dog poop bag’ and ‘bio bags’ are the most acceptable terms. I suspect that this is because the general public have a weaker stomach than I do, and need ‘poop’ presented in a sanitised way.

That was a pun by the way, because all evidence suggests that I do have an actual weak stomach. My weak stomach cannot be sugar coated.

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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;

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

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

• 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

• The shower, never underestimate the power of a clean peach

• 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

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

• Colin and Bruce.

• Films from my childhood that have been seen a morbidly obese amount of times

• A tidy and clean(ish) flat

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

• In this heat, a fan permanently directed at the body

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

• 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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Crashed

Last Thursday morning, I woke up and asked myself how it could possibly be Thursday morning and I promised that I would write about how I had spent three days in bed with time on fast forward, later that day. The only issue was that on Thursday, I was still in bed and my time was still on fast forward. It was a feeling that lasted for a further two days. It is Monday morning now and I no longer feel like my time is just passing me by, nor do I feel like I need to stay in bed all day. It is a feeling that I can only describe as an achievement. An achievement that needs to be embraced in moderation, obviously.

The fault lies with the steroids. The beastly steroids, steal my time and effect my mood, and try as I might, when it happens there is not a damn thing I can do about it. Last week, I was crashing. I want to give what happens to me a new name, as I doubt the word ‘crash’ is medically accurate. Though a ‘crash’ is exactly what it feels like to me. My body stops, so too does a lot of my cognitive function and I temporarily do not feel like myself. The time goes by so quickly; the lack of achievement feels like a complete waste of my 30s.

Here’s a little secret; cancer is not glamorous. Sometimes, you really do have to lie in bed, sweating, whilst flashing your knickers, shoving ice lollies down your gob to enhance the taste buds, for five whole days. Knowing that whilst you, or in this case I do this, everybody’s life around me just goes on like normal. I am one to blow my own trumpet and as I told myself last week, it takes a certain amount of bravery to do absolutely nothing and not cry hysterically about it, feeling insanely sorry for oneself.

My week, my friends, went a little monotony like this…

On Monday, my mouth tasted like I had had an every lasting metal flavoured gobstopper and I was tired. I was not tired because of my steroids, I was tired because I had spent too much energy on the Saturday before the Monday. I therefore decided that my flat was where I needed to be. I also completed the last parts of my crash preparation, which pretty much involved making sure that the fridge and freezer contained food that could be cooked by a brain dead zombie experiencing dizzy spells, who struggles to bend down and calculate timings. The preparation was important, I had decided in the week leading up to it that I needed to see whether I could look after myself during a crash. I also decided that it was essential for me to succeed in this challenge.

I cannot remember anything else about Monday apart from the fact that I watched a film with Housemate on and I told him just before I went to sleep that my crash had started. It’s a subtle change, but last week the first thing I noticed, apart from the horrific taste in my mouth, was not the fatigue but the fact that the skin on my neck and shoulders felt bruised. This is what steroids do to me. Well, it is one thing steroids do to me.

Tuesday and Wednesday are a blur. Tuesday and Wednesday were the worst days. I know I showered and got dressed, but neither activities occurred before midday and neither activity was what I would describe as easy. I started several films, but I do not think I actually finished any in one sitting. I wanted to sleep and when I was not sleeping, I was really just staring at the tea stain on my bedroom wall unable to collect my thoughts. I may have spent a lot of time looking at my phone, hoping for and getting news from the outside.

I did not leave the flat during this time. Not because I did not want to, but because I knew that I probably would not have been able to get anywhere. Housemate cooked me dinner and encouraged me to leave my bedroom, which was a good thing. Moving the 16 steps from bed to sofa, gave me a nice change in scenery and online demand television service.

I was not maintaining a spreadsheet of my activity, but it would be remiss of me not to mention that during these two days, at least two hours of my time was spent attempting to toilet. On Wednesday, after 45 minutes I had to give up because I had a dead leg. If you want me to be graphic, it was my right leg.

By Thursday, when I felt it should only be Tuesday, I needed to escape the flat. Escape I did, 10 minutes in a taxi to a matinee screening at my local cinema. It was progress. I also made a little trip to Sainsbury’s on my return to stock up on ice lollies. I was out of the flat for three hours and that was enough for me. It was too much for me. By late afternoon, I was back in bed, feeling once more like a zombie. If zombies also experience inexplicable rage, which after I few hours, I deduced was due to the fact that from Friday-Monday, I had taken a rather hefty dose of mood altering Dexamethasone and not because Housemate made me wait less 30 seconds to reach my ice lollies.

Friday was much the same as the three days that proceeded it. I was improving, I know this because I actually cooked something rather than reheat something to eat. I also cared about what I ate and it was not something I had to do for energy. Okay, I also went out for lunch with my cousin. That trip, was a whole hour out of my flat.

All in, last week was a frustration. It was not helped by the current humidity in London. Heat and steroids are not a happy cocktail. That said, it was not as frustrating as I thought it would be. Unlike a fortnight ago when I thought there was not a chance of me getting through my treatment, I realised as I was lying in my pit, that I would get through it. I cannot sugarcoat it, the crash is awful, and I hate that because of the extra dose in my first cycle, I will be crashing again next Monday. Next Monday for goodness sake.That said, this is temporarily my job. Taking my medicine, doing what I am told and spending a week in bed, is my new job. If I think about it this way, I know that I can banish some of the frustration away. It is not laziness. It is just the way things are for me.

I do not want to embarrass anybody, but I know now that whether I crash in Deeping or London, there are people around who have my back and are on hand to assist me, should I need it or request it. The need and the request, do not often go hand in hand. I felt thoroughly supported last week, and although it was me feeling and looking a mess, it felt almost like a team effort with Bruce as the mascot.

I friend told me that on Thursday of last week she went to an exhibition, to a lunch, to the cinema and then went out in the evening. Her day had more activity than my five days in bed. It had more activity than my entire week. I will learn in time to not get jealous about such displays of energy. Like I said, in a week’s time will be a good place to start.

As for my weekend, well, I ended the crash with a casual trip to Buckingham Palace. That in itself and the two shandies I had in the evening, meant yesterday was a day of rest. Now let me tell you something for nothing, after a week of not being able to leave my flat, a day choosing to stay in my flat watching a sitcom aimed at females, may be one of the finest feelings known to myeloma-kind.

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Buckingham Palace

And now, I shall attempt to have a fulfilling week. I need to refill my cupboards. Stat.

EJB x

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Day 5

You’ve seen the drugs. The story of my side effects is going to be a long one, and will no doubt consist of several chapters. In the meantime, if anybody was in any doubt of what I feel like when the steroid crash starts to kick in and I have had a few doses of Oramorph, then feast your eyes on Day 5.

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I do not think I look like this today. I most certainly do not feel like this today and for the moment, I think that is all I can ask for.

EJB x

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The Drug Regime

I have been on my new treatment for 12 days now. Considering I have been through it all before, twice before, it is taking some getting used to. They come with endless side effects. It is a list that is long and is literally a pain in my bum. Practically however, taking the drugs, sorting through the drugs, swallowing them and remembering to take them is a chore. It’s a regime, it’s a 24 hour drug taking regime. If I were lighter, I would rattle. I am not light, so I do not rattle. My overflowing drugs drawer does that for me. It is overflowing into my make up drawer and that drawer is already full. The stuff in the drawers isn’t even the drugs I have to take for the next week, for they are in my handy dosette box. It would be impossible to remember to take everything without the handy organiser. That’s a tip from me to you. Invest.

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I have yet to work out how many drugs I take every day. I am doing that as I type. I keep throwing numbers around, 15, 20, 30. You get the gist. It is a lot. This blog, will act as a useful exercise, if only so I can accurately boast about how many pills I have to take, when most people opt to take vitamins. Anybody who has myeloma, or any form of cancer for that matter, will not be surprised by the volume of drugs. Correction, free drugs. I know I must be used to the number of pills, by the volume I can fit into my mouth and swallow in one go. You have to give it to myeloma, it has given me one hell of a gag reflex.

As My Myeloma has given me some delightful feelings in my spine, I do not only take drugs to combat the disease. I also get to take a daily cocktail to manage my pain. Unfortunately, we are not quite at the point where that pain is managed. That will come. In the meantime, I am on four different types of medication, excluding the bone juice, which allow me to get out of bed. Currently, because I have decided to up my MST dose, I am taking more pills as the pharmacy decided to give me 10mg tablets instead of 30mg. They will receive a request the next time they dispense to be certain.

My four week treatment cycle involves three weeks on Revlimid, and four days (bar cycle one when it goes up to eight) days of steroids. So I can take these, I then have to take six other types of medication to protect my body from bugs and other fun things.

The Sharps Box is also back. It’s still yellow.

Oh, and as I still experience the side effects from the menopause, I continue to have HRT seep into my skin from a semi permanent patch on my bottom.

The contents of daily dosette box then, is currently like this (italics equals pain):

MORNING
1 x Aciclovir 200mg
1 x Ranitidine 150mg
1 x Allopurinol 300mg
2 x Docusate Sodium 10mg 💩💩💩
2 x Paracetamol
4 x MST 10 mg
1 x Diazepam 2mg

AFTERNOON
1 x Co- Trimoxazole 960mg (three times a week)
1 x Aciclovir
2 x Parcetamol

EVENING
1 x Revlimid 25mg
1 x Aciclovir
1 x Ranitidine
2 x Docusate Sodium 💩💩💩
2 x Paracetamol
3 x MST 10 mg
1 x Diazepam 2mg

1 x Fragmin injection

On Days 1-4, after breakfast, you can also add;

20 x Dexamethasone tablets

On my week off, I get to skip the Revlimid.

So, if my maths is correct, I take between 26 and 48 pills a day and an injection. If I am having a particularly bad day, I may also take 10mg or two of Oramorph and another Diazepam…. And I wonder why I cannot poo.

I’ll tell you something for nothing, it’s a lot of packaging.

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EJB x

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Cilit Bang – User Survey Spring 2014

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

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

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

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

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

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

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

EJB x

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The Inconsiderate Old So and So

The hour is 03:31hrs and I think you need to be aware that at this moment in time, I am highly aware of my hands and my feet. My feet, my hands with their ten fingers, when not buzzing are stinging. Let us throw my left arm into the mix for added discomfort. The effect of which, does not create a snug bug in a rug scenario.

As I am sure you can deduce, I am finding this development to be most inconvenient. For such awareness of appendages, opens the door to thoughts that normally are only permitted one minute of attention per day, before being shut away until the next day, and so on and so forth unless I am feeling ‘hormonal’.

Hands and feet. I have hands and I have feet. There is a thin layer of fibreglass on them.

As parts of my body continue to prickle, it begs the question of why I am aware of them today, when I was not aware of them at all 28 days ago. As one lies in the darkness of night, I can confirm that pondering the possible consequences of me being able to tell you that I have hands and feet, does not directly lead to REM.

Ten fat, marginally hairy fingers. Ten fat, marginally hairy fingers.

Then one remembers a conversation they had whilst receiving the root cause tonight’s unwelcome guest, around someone special’s forthcoming birthday. A birthday, which happens to be a milestone. Then what happens here is a dark trip into Maudlin Town, because a birthday to me is not simply a sign of getting older, it is a big, flashing neon sign that says I have a higher rate of mortality than you. To me, celebrating it is like taking photographs at a funeral; inappropriate.

Fire. Fire. My arches are on fire.

So then, the options for commemorating my birth become more entangled in my brain. Not celebrating it would be depressing. Celebrating it may also be depressing, but then, it may not be. Though what if there is nobody to celebrate it with me, My Myeloma does appear to have diminished the number of people I can turn to for a hug.

Bad vibrations. Bad vibrations.

The thought about one occasion then expands into the wider life losses I have experienced because of my illness. It expands into every life loss I have experienced because of My Myeloma.

Punishment for not being sinistral, that is what this is. Attention seeking.

Then the frustration creeps in. Frustration at being misunderstood; at having no control of my life losses and having to explain the impact of such losses over and over again for it to continue to be misunderstood or bypassed; which in turn only serves to make me feel more and more isolated and alone.

And then before you know it, I am here absolutely hating myeloma and everything it stands for. It is, after all, most inconsiderate. I am resuming some sort of life now and I do not have the time for this sort of nonsense. I am on the 07:35hrs train to Wakefield for goodness sake.

And then it goes round and round and round and round.

Anyway, I must put my phone down now. I have lost all feeling in my thumbs.

💤💤💤💤💤💤💤💤

EJB x

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My Bonus Meds

There are times when I think I am used to the weaknesses that come with my post-transplant body. There are times when I know I am not used to my post transplant body. My post transplant body requires endless amounts of TLC and as I am discovering, drugs. Lots of drugs. Not the sort of drugs that have me reaching for the Domperidone and send to me my bed at 10.36 in the morning. I am talking drugs that seemingly have absolutely no connection to myeloma. I am talking drugs that require me to visit a pharmacy that is not located by the lift of the ground floor of the Macmillan Cancer Centre. A pharmacy where I actually have to queue with the normal people.

I am over my little trip to Accident and Emergency. If I am brutally honest with myself, I got over said incident slightly later than I pretended I did. At least I am over that interruption into my uber important life. The benefits of my transplant do outweigh the negatives, but that does not mean that the negatives do not have been wanted to unleash mass violence, if I was physically capable of such a thing, at the world. A cold for me is not a cold for normal people. I cannot plough on through, I am sent to my bed by my body and there I have to stay until my new medications have worked their magic. My post transplant body means a cold becomes an infection and that results in a visit by Mr Asthma intent on taking my breath away and knocking me right off my feet.

I know I have to get used to it, get used to the likelihood that every few months, I will be reminded quite strongly, that I have myeloma. Penicillin reminds me of myeloma. The frustration, oh my gosh, the frustration.

And so, to restrict the frequency of these outbursts and the need of antibiotic tablets large you feel like you are swallowing a hole Werther’s Orginal, my drugs drawer now contains a whole host of asthma related paraphernalia, including one of those things I have to blow into everybody morning and night. I am plotting a graph.

In addition to my breathing difficulties, there is also a sticker permanently placed on one of my butt cheeks. This medication, known as HRT, is normally reserved for women of a certain age who hopefully have used their extensive years wisely and to the full. The plan of HRT is that it will eventually stop me sweating profusely in the middle of meetings or when other people are trying to eat in my presence. It will also, I am told, prevent some of my morning aches and strengthen my useless post transplant bladder. So far, it makes me feel more nauseous than I am normally.

I am now well known at with my GP.

All this medication is designed to keep me healthier for longer, but it also imposing a responsibility that I did not ask for. It is on top of the 9 pills I have to take daily for myeloma. It is on top of the side effects I have from myeloma. It just want to be left alone. I also really want somebody to tell me where I am supposed to house all this stuff.

At least it is all free. My bonus meds.

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