Tag Archives: pills

Thumbs Down πŸ‘ŽΒ 

WARNING!

The following blog does not contain any references to feelings or death (bar a brief discussion about my hatred of something). Therefore, to break out of my current cycle, this blog is not depressing. My usual content will resume at some point, so in the meantime, sit back and enjoy reading something mundane. 

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After living with Myeloma for 1589 days, I thought I had experienced every possible side effect, bowel issue, general irritant and injury possible that relates to this wretched disease. Yesterday, I discovered that I was wrong. Things can still happen as a direct result of having Myeloma that I can not foresee. Yesterday, my unforeseen injury was paper cuts. Those small things. That’s right, for nearly 48 hours, in spite of my current inability to walk up or down any stairs without clutching on to both banisters and leaving the sound of what some would consider to be very odd sex noises in the air, whenever and wherever I do something remotely ‘strenuous’; I have been moaning about paper cuts. * For the past 48 hours, all of the above pales in insignificance to the paper cuts, the bleeding paper cuts I received all in the name of Myeloma.


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How could this possibly happen I hear you cry? How could I, Emma Jane Bones make such a Living-with-Cancer -rookie-error, that resulted in the breakage of two thumb nails and cuts to the skin between the nail and thumb, on both thumbs at the same time? 

The answer lies with tablets. Lots and lots of tablets, technique and a dash of poor post application of gel polish nail care.

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I dread to think how many tablets I have taken over the 1589 days, I wouldn’t even know how to calculate it. As a rule of thumb, I work on a fortnightly basis instead because sorting my medication is the most depressing thing I have to do on the regular. I do not want to be reminded of my shackles on any basis, but having to do it twice a month beats having that feeling it evokes four times a month. On a far more practical level, sorting my drugs in bulk creates space. Yesterday was Drug Delivery Day, so I was in desperate need to make the packaging of two bags full of drugs, disappear. I live in a room in a two bedroom flat in London;  the space is too limited to include cancer medication and the unnecessary packaging that comes with it. I ” have two dossette boxes, should I live the dream and get four?

I currently take at least 33 pills a day. My weekly pill total has 245 pills destined for my gullet, which takes into account the extras medication requires for Mondays. That’s 492 pills per fortnight; that is 492 individual pills removed from a box and then pushed out of its packaging into the relevant divided section in my waiting dosette boxes. 492. 492 times I pushed one of my thumbs against the slab a pill willing it to come out of it’s packaging before the top of my thumb hit the empty casing of the plastic. I probably failed 491 times. With each push, I  added further injury to my already injured thumbnails. I should have known better. 

Yesterday, I also receieved over 300 of my prescribed laxatives spread across at least six different boxes. It’s been a while since I mentioned it, but know that this is medication js still extremely cruicial to my wellbeing. Being the Myeloma Pro I once was, I decided to decant these into an old empty, correctly labelled,  medicine jar I had kept for such an occasion. That’s one of my Top Myeloma Tips by the way (in modern times, it could also be referred to as a ‘hack’ but I am not modern nor am I a Buzzfeed article). Who needs boxes when you can have a clean and empty medicine bottle with a safety cap? As usual, I’m digressing, back to the story at hand; it simply meant there was approximately 300 pills on top of the 492 pills to be popped.

It becomes grey. At some point during my  hour of drug dispensing, I broke both my thumb nails. As my legendary stoicism lives on, I  too, soldiered on in spite of the pain. I kept going, despite my thumbs turning more red with every push. I endured. I thought it couldn’t break me. Then I saw the blood to accompany the stinging feeling that had been going on for a good thirty minutes and I saw my surrender. I turned to Housemate and asked him to sort out the remaining laxatives.

Quick sidebar, can you see why I hate the job in question? Obviously you can. I have developed a coping mechanism to get through it all. There is only one pleasant thing about filling my boxes and believe it or not, it’s the colour combinations of my medication.  Stick with me. At nighttime, I take a blue pill, one bright orange , two pale yellows, two bright yellow, two grey, one pale orange and several white pills of varying shape or size. Once safely tucked into their relevant sections, I look at them through cross eyes. It’s hashtag satisfying. 

EJB x
* This really just means any movement greater than holding my mobile phone with rested elbows and tap, tap, tapping away. Anything else, results in a noise and a grimace.

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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 πŸ’©πŸ’©πŸ’©
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 πŸ’©πŸ’©πŸ’©
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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Clogged

I am going to spend my day waiting to get poorly. If that doesn’t happen today, I am going to spend all day tomorrow waiting to get poorly. I have been told what symptoms to look out for over and over again; the squits, vomit, mouth pain and fatigue. Done. Squits, vomit, mouth pain and fatigue. The emphasis on this story is the squits. I am expecting, and have been expecting lava.

So imagine my surprise this morning when I realised that I am clogged up. That’s right, the increase in medication has made me constipated. I was not expecting this.

Fortunately, Mr Constipation and I have met before… He’s not going to know what’s hit him next week, neither, I suppose, will my anus.

EJB x

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Travel Pills

As with any new treatment, I have discovered that I get new drugs. Lots of drugs as it turns out. Some I have had before, and some are brand new. Pills are pills. Until I enter the hospital, it is my responsibility to remember to take my pills four times a day. I am trying to pass the buck to others to remind me… Just in case. The pharmacist who introduced herself to me yesterday, who has met me on more than one occasion previously, helpfully produced another drug schedule for me, which misses off my MST. The person trained in ladies bits and pieces was correct, I have to take blood thinners because of my girth. I mentioned this to the pharmacist; she looked uncomfortable.

The schedule, by the way, is this:

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If you cannot be bothered to work it out, I am taking 28 pills a day, plus mouthwash four times a day and an injection once a day. It’s your standard holiday first aid kit. The anti-sickness makes me rattle. I have rarely taken it before as a routine drug, but as the nausea is supposed to be so horrific, I am more than happy to take the precaution.

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Because of all of this, I am rattling and toxic. After all, this is just the stuff going into me outside of the clinic.

Did I mention all this was free?

EJB x

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VDT/VTD Complete

Last night, shortly after 23:00hrs, I made my way to my Drug’s Drawer, which it’s quite a distance from my bed, removed the packet of thalidomide and felt relieved, that for the foreseeable future, I was taking my last dose of thalidomide. Once I swallowed the two plastic coated tablets, that was it, VTD/VDT was over. I was done.

Considering that I did not know I was going to be on VTD/VDT, nor did I want to, I can say that the last four months, 112 days, has gone reasonably quickly. In that time, I failed to establish the correct name of the treatment, but I do know that I took 224 tablets of thalidomide, 480 Dexamethasone tablets, have 16 more Velcade injections and thus have 112 nightly injections of Fragmin, equating to four full sharps boxes, which needed to be disposed of. All of it was done without a break. My last Velcade injection was last Friday, prior to the long walk to my drugs drawer, I gave myself my last injection of Fragmin, and my last dose of Dexamethasone, thankfully was a good few Mondays ago. The times, they are a changing.

Clearly, it is probably not the last time I will ever take these drugs. At the start of January, I said I had had my last ever Velcade; this was, quite quickly, not the case. I have learnt by now, in this merry game of myeloma treatment, to never say never. I may have given myself my last injection of Fragmin, but if my transplant does go ahead, I imagine that I will be given something similar to Fragmin because I am not going to be moving much, and as the person trained in ladies’ bits and pieces said, my weight makes me more vulnerable. Unfortunately, steroids form a back bone to myeloma treatment according to the Medically Trained Person I asked on Wednesday, so at some point, they will also return to my life. In spite of that reality check, that in all likelihood, last night was not the last time I would take any of the drugs, I still allowed myself a wry smile and an inner flutter of excitement that I had completed this round of treatment. The sight of that empty thalidomide box, my oh my, did it give me goosebumps.

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It is done. One more chapter down.

The journey I am on… Bloody hell.

Mamma Jones said that I should celebrate last night, but unfortunately, after a relatively busy two days prior, I was incapable of celebrating yesterday. I did not leave the flat all day. To be perfectly honest, I do not recall walking past my bedroom towards the front door. I essentially existed within three rooms. This fact, did put a dampener on any celebrations because my nemesis, Mr Frustration reared his ugly head. Though, that does bring me on to the second reason I am pleased this treatment is over. That side effect, fatigue. The fact I have taken my last dose of thalidomide, means that at some point in my near future, the level of fatigue I have been experiencing will fade. It will not be today, but they will and with just 11 days before I go in to hospital (possibly), that is most welcome. It is beyond welcome in fact. I do not want spend any of the days I have left, this side of my transplant, not leaving my flat. No way, Jose.

So, with great pleasure and relief, I can say, VDT/VTD, complete.

EJB x

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A Month’s Supply

I am used to shoving drugs down my gob. Prior to my diagnosis, I was rather terrible at it, which the multi-vitamin tablets with a sell by date of March 2010, I found in my drawer would testify. I am now pretty good at remembering. I may have forgotten one or two doses after PADIMAC ended, but on reviewing the bag of drugs I was given yesterday for VTD, forgetting is not going to be possible. There are a lot of drugs and I fear I am going to have to be stringent with the timetable. I hate a timetable. It is day two and I am already behind schedule with the steroids. I would have liked to have taken them three hours ago. I’ll pay for that tonight.

My name is Emma Jane Jones and I am a drugs fiend. Apparently.

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The above is my month’s supply of drugs. Well, 28 days to be precise. The pile contains all my VTD meds bar the Velcade, which I get to go to the clinic for once a week. The bag itself contains 502 pills and 20 pre-made injections. I also have a further drug left over from PADIMAC, which I also have to take three times a week.

I just did a quick calculation in my head and I do not have enough syringes for 28 days. I will need to sort that. For this incredibly interesting exercise, that though is by the by. Honestly, this blog is so interesting, I am setting you up for a day of fun.

Now you have been warned, I am imagining that my daily drug routine is going to look something like this. Brace yourself.

I wake up, stretch, look at my phone and take one Lansoprazole to protect my stomach with a bit of water. Wait for 30 minutes to an hour before I take two 10mg and a 5mg tablets of MST (morphine), one Aciclovir, which I believe helps to fight of infection and a Allopurinal tablet, which even after a Google search, I do not have the slightest clue what it is for. I know I was told what it’s use was in September. I have since forgotten because the drugs made me, and I have thrown away the piece of paper telling me its purpose in my life.

On Velcade Days and the day after, I also need to take 10 2mg Dexamethasone tablets (steroids, sorry FUCKING STEROIDS!!!). I like to take these as early as possible, so they do not keep me awake. History tells me that they may well still keep me awake.

At some point in the afternoon, I treat myself to another Aciclovir tablet. Three times a week, on a Monday, Wednesday and Friday, this will be accompanied by a large glass of water and a Co-Trimoxazole tablet to prevent chest infections.

Around 19:00hrs, I will gently caress the skin around my stomach with an anti-septic wipe before I stab the area with a blood thinner known as Fragmin. This is required because the Thalidomide can cause blood clotting as well as birth defects in babies. You have been warned.

At Bedtime Garden, I then get to finish my day with another Aciclovir, one 30mg and one 5mg tablet of MST and two Thalidomide tablets. Apparently, it is best to take the latter at nighttime because it makes you sleepy. I can confirm that I had no issues with sleep last night, but it was only day one. I will assess over the next week when it is best for me to take this drug. Interesting huh?

So, the survey says that on a good day I am prescribed 12 tablets and an injection. On a Monday and Wednesday this increases by one to 13. On a Friday, which is currently my Velcade Day, I take 23 and the injection. On a Saturday, I take 22 pills.

It’s nothing really is it?

Well, I also have in my Drug Drawer some Domperidome, an anti sickness pill, that I can take as and when required and the good old faithful Paracetamol.

Remember, you British Tax Payers are paying for all of this and for that I thank you.

Must dash, my stomach is now lined with a fibrous milkshake, so I must take the ‘roids’.

Boom.

EJB x

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