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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3 thoughts on “That Friday Feeling

  1. Van says:

    I’ve written a few times before, some may have never made it past The Web Trained Experts. I’ll try again. Your suffering frustrates me beyond tears, belief and anger. There are better treatments out there that will vastly improve your QOL. Do you do any research on the IMMF or Myeloma Beacon sites?
    It seems you are taking a ridiculous amount of Dex that would either kill a Kentucky Derby contender horse or make a human resemble a hot air balloon. There are also ways to beat fatigue: ironically ANY kind if exercise, but also something your cancer doc will never mention. Adderall , a learning disorder drug that when taken by those without that unfortunate problem acts as wonderful Speed, yes Amphetamine salts. You don’t need high doses, maybe 10mg and you can just take one per day (I like the NON slow release version to avoid the already Demon Dex sleep deprivation ) it’ll make your mind clear as a bell and make you awake and energetic. End of rant. Hope this helps.

  2. Terri J says:

    We were told yesterday that my daughter has relapsed. 18 months after her transplant. I was hoping it would last much longer. So the plan now is 2 days of Kyprolis with 40mg of dex. for 3 weeks & then a weeks vacation of nothing.Not sure yet how long this will be done & what is next. I’m thinking another transplant.This roller coaster ride is having to many downs & the ups are not long enough.

    • ejbones says:

      I am very sorry to hear about your daughter’s relapse Terri. I hope she is getting on okay with her new treatment. It is indeed a bloody roller coaster.

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