Expecting the Expected

It is strange to be surprised by the expected, but I am. I knew that I was going to have a dodgy tummy, nausea and fatigue, I have been preparing for it for so long, I was almost bored of it, but now I am in it, I can wholeheartedly say it is nothing like I expected it to be.

I think my current situation, is one where to truly understand it, one has to live it. Saying the words, will not make you comprehend the force. And let’s face it, there is a lot of force. No amount of preparation is going to make a stomach cramp any easier.

On Sunday afternoon, when the diarrhoea started to come, I sat on the toilet and thought to myself, that if that was it, it was going to be easy. Clearly, that wasn’t it. Fast forward a few days to last night, when I was forced by my body to have my tenth poop of the day, whilst doing that, I developed a cramp that was so hideous, I vomited (500ml by the way) and sweated. It then took, three more visits to the toilet, five hours, IV anti sickness, IV fluids, oral anti sickness and stomach pills and oramorph for the pain to subside. Until that pain did subside, I spent that time awake, unable to do or say anything, lying on my bed thinking, this must be the worst I am going to feel. It must be the worst right?

I do not know if I have yet hit the bottom. I currently figure that my diarrhoea and vomiting cannot worsen, but my fatigue can, if I continue to lose fluids at the rate I am losing fluids. That’s basic science right?

I am going to try and explain my current role in this world as Green Excrement Girl, but I am not doing it to gain your sympathy, it is just to explain what this feels like. I’m having to think of it in much the same way; if I start to feel sorry for myself, I become a martyr to it. I am no martyr. Right now, this is my job. So, as well as expecting the expected, I have to accept it too. I am just trying to ride the most unpleasant wave that has ever existed.

Since Sunday evening, I have not been able to hold down any liquids or foods that have entered my body. The Medically Trained People were trying to get me to drink 2.5 litres a day, but it was decided yesterday, that attempting to do 0.5 litters caused so much discomfort, that I did not need to do it. I really am trying, and yesterday, I even felt hungry, but after a few sips of water, spoonfuls of mashed potato, the mixer in my stomach started churning and I had to run to the toilet to deposit it. This happens whenever I drink or eat. On Monday, it was worse, because I ate much more, thus the sheer volume, was, well, impression. Mamma Jones was soon sent out to buy moist toilet paper. Practical. I do not want to irritate any piles.

Managing the diarrhoea is one thing, but it is not my only symptom or problem.

Practically, it requires me getting out of my bed on the lefthand side to unplug my pump, wheel my fluids and myself round the foot of the bed, navigating wires and other obstacles, past the sofa, to the bathroom. On competition, when I am back on my bed, the pump needs to be reset, because it’s battery is broken. I taught myself how to do this yesterday, because I could not stand all the beeping.

Physically, the diarrhoea is accompanied by nausea, which until last night, had just been nausea, and not full scale vomiting. If you were wondering, the vomit, was the same colour and consistency as my poo; slime green. So yes, nausea, it is a bugger. I feel constantly sick. There are scales to it, but in short, there is always a feeling of sickness around as is its friend, the stomach cramp. The stomach cramps, for ladies, feels like the worst sort of period pain you will ever have, at it’s worse, I imagine it is like giving birth. I actually think this. It constantly feels like they is a wooden spoon, in my stomach making potions, occasionally making sure it gets all the ingredients by scraping round the sides. Last night, I knew there were drugs in me, because my mind started to create stories for what was happening in my stomach. I kid you not

So, as somebody has had a nasty bout of food poisoning will know, because of all of the above, I feel weak. I am dehydrated, my blood pressure is low and I constantly tired. Yesterday, because of the dehydration and the byproduct, dizziness, I had to sit on the toilet for ten minutes longer than needed, to ensure I would not faint on the long walk back to my bed. Again, with that sort of activity, I am running a constant risk of piles. I am talking grade 4 level here.

Above are my main adversaries, but I also continue to fight a fever, a toothache, a sore throat and ugliness. Oh, and my neutrophils are flat.

Fortunately for me, the Medically Trained People are marvellous, and more crucially, they have seen everything I am experiencing before. The Doctor explained yesterday that they can give me so many more concoctions to get me at my most comfortable, she also said, which I guess is a good thing, nothing is happening that should not be happening. I am no medical marvel.

The difficult thing with all of this, is that nobody knows for certain if this is going to work. I have seen a lot of comments on the blog mentioning the word ‘remission’ and I have been asked about it much more than that in person, but the truth is, my transplant is unlikely to give me that. Everybody’s experience is different. It’s my best chance. The reboot is what I need. Back in January, when I was sitting on my paraprotein level of 20, I was told that it would be highly unlikely to walk out of a transplant with a level of zero. At my last Clinic Appointment, the Senior Medically Trained Person said that a decision will be taken after my transplant as to whether I have to start a new course of treatment straight after or if they are just going to let my body be for a bit. It could be that my body does surprise everybody, but I think we all need to be realistic about what my transplant is going to achieve. If the last 11 months has taught me anything, it is that My Myeloma is one stubborn arse. Time will tell. I am going through this, putting up with this, because somehow, maybe not immediately, I know it is going to give me a holiday, but more importantly a return to normality.

As for today, I am hoping for a better one. Late last night, my stool sample came back and I do not have an infection, which means that I can take Imodium. Yes. Imodium. The day might not be better, as I was threatened with having to measure all my outgoings yesterday, which sounds fun. Time will tell I guess.

Today is Day 7.

EJB x

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5 thoughts on “Expecting the Expected

  1. Terri J says:

    Sounds like things are going par for the course. If your numbers are at 0 now they can start going up & you will start feeling better. Not like Wonder Woman but better. You mention Mama Jones. Does your hospital let her stay with you at night? If not does she go home? I live 2 hours from Philadelphia where my daughter lives & works. Her hospital would not let me stay at night so I moved into her apartment for the duration.
    Hope is the thing that keeps you going. Yes everyone is different that is why doctors can’t tell you what will happen for sure. I think the doctors are surprised at how well my daughter has responded to treatment. Sending positive energy your way.

  2. Your blog followers, (who are many, I am certain) probably do not know how to respond to this kind of vivid and picturesque report on the comings and goings of your precious self, but I think many might join me in saying… we are all hoping, nay INTENDING, you are different enough for this to bring you a remission, for the highest and best good of all concerned, so be it and so it is!! And hats off to Mamma Jones for being in attendance – as a mom I know it is not easy to be walking in her shoes.

  3. Deborah says:

    Oh dear this doesn’t sound something to look forward to I hope they find an alternative by the time my numbers have come up. Poor you I don’t know how you are still managing to write such an eloquent blog. I really hope the worse has happened and you now start to feel better very soon for your sake and selfishly for mine too. You are constantly in our thoughts and we read your blog every time it comes out. Take care and hold on tight I am sending you positive thoughts , praying, ( not that I am particularly religious) speaking to the universe and anything else I can think of that may help you.
    Deborah x

  4. alexbicknell says:

    This may be no consolation if you are just lying there feeling shit (which is exactly how I was a week after my SCT), but for me the worst days were day +5 to about day +10. Then one morning I woke up feeling better. Not good, mind, but better than the day before. And it’s been mostly positive since then.

    My doc once told me (though he may just have been humouring me, because I didn’t get the VGPR/CR response we all wanted from PADIMAC), that myelomas that go into remission quickest can be the ones to flair up quickest – i.e. it is not necessarily a bad thing to have a stubborn myeloma. And there are people around who have achieved amazing remissions after all sorts of treatments failed to knock it out, along the way.

    Stay strong.

    • ejbones says:

      Your comment did help thank you. I tend to just break each day into one and get through that, but today the Medically Trained People said my turn will be in a day or two. The thought of being able to drink without vomiting, is overwhelming.

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