Tag Archives: UCH

It’s Chemo Time

After a week of anxiety, at 14:50hrs today, a mere 3 hours and 50 minutes after my appointment time and 5 hours and 10 minutes after I arrived at the Clinic, I was reunited with this beautiful sight:

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In other news, I may have fractured my rib and if the pain persists, I will be sent for an x-ray. If I do have a fracture, I believe the treatment involves waiting for it to get better. This is similar to most things when you have MM.

Now, if my transport could arrive so I could finally have my lunch, I would be a happier Very Pleasant Young Lady.

EJB x

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The Third Cycle

Today marks day one of my third cycle, already. Thus, today is my 43rd day on the PADIMAC trial, already. I was formally diagnosed 50 days ago today, already.

Doesn’t time fly when you are having fun? Lots of fun.

So today and for the three days following, I will be receiving chemotherapy and self administering steroids. At the end of the last cycle, it was proving difficult to find my veins for the cannula. The cannula is needed so I can receive the drugs intravenously. Why can I not have veins like Madonna? I used to have these lovely blue veins in my arm, visible for all the world to see, well, on closer acquaintance… Now, my veins have gone into hiding. This means I am going to bruise.

Later in the week or early next week, I will find out how much my paraprotein has reduced by during my last cycle. I was so pleased with my results from the first, a 35% reduction, from 40 to 26. But then, I stupidly asked one of my doctor’s whether it was a good result and his comment that it was not 50%, has plunged me into a pool of doubt. My positivity is trying to find its way back, but for the first time since I started the trial, I have properly started to think about this trial failing, about my body not completely responding to the treatment. I want it to so, so, badly. I don’t care if I do it in two more cycles or four. I just want it to work. I want the paraprotein gone. It is good to be aware of the worst case scenario, of course it is, and that is why I continue to ask the questions, but I do not want the trial to fail. I do not want to be preoccupied with the thought of it failing either. Maybe I am thinking this way because I have heard of two success stories of late and rather than finding comfort in this, the statistic has me worried, frightened that I am not going to respond. If I am honest, I am also jealous. Jealous that others are getting better and we do not know yet whether I will. I have also established that I am incredibly impatient.

I do not want to start my next round of treatment thinking like this. I strongly believe that a positive outlook will only help the success of the treatment. My frown has to be turned upside down. This feeling is not me. I am not this negative, an occasional bitch maybe, but not negative. Hang on, maybe this mood has something to do with another cycle all together… Ah, hope. A little ray of light shining through.

I want and need you all to remember the chant and will my recovery with a complete response, which will mean a paraprotein level of <1. You also now need to will the return of my positivity. I'll be doing all of this as well, so you are not out there on your own.

This is a blip. A temporary hiccup. I’ll be back, sooner rather than later.

The Cosmos seems to be in my favour, for coincidently, today also marks my first appointment with my counsellor. I think it is clear that I now need it.

Happy Monday.

EJB x

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PAIN Management

WARNING – this post is long. Some would say too long. It’s basically a mini-thesis about My Pain. I apologise, but it is my favourite subject after fibre, so… deal with it.

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Pain is never really something I had experienced before My Myeloma took hold. Clearly, there were times in my past when I thought I was in pain, every 28 days for example, would bring along a little treat for my womb and there had been a few occasions when I may have drunkenly done some bad things to my ankles; I look back on these fair times now with mere discomfort and longing.

Given this fact, the concept of ‘pain management’ was alien to me beyond a Ibuprofen, and it took nearly a week of being in hospital for me to understand what it meant. Here’s a little tip from me to you, if you are ever in hospital suffering from severe pain and you are asked on a scale of one to ten how much pain you are in, if you are in so much pain that it takes you 20 minutes to work up the courage to get up out of your bed to toilet and you only get up after those 20 minutes because you are about to wet yourself, on the Official Medical Pain Scale, you are are 10. Your pain is not at a 6 or 8 because you can get out of bed, it is a 10 because the pain you feel when you get out of bed, is like somebody standing on your body, whilst your bones are snapping in half. At least, that’s what mine was. To start with, when I was asked whether my pain was being managed, I thought the Doctors meant that they were giving me just enough drugs so that it only took me 5 minutes to work up the courage to go to the toilet. Pain management, as I understand it now, actually means being able to live as much of a normal life as you can, with minimal pain. Or as Wikipedia puts it ‘improving the quality of life’. My pain management had to be worked out by giving me oral morphine whenever I was in pain, and to begin with, the only way the nurses and doctors would know if I was in pain, was if they asked me. It was not because I am brave and it was not because I am timid; it was just because I did not believe that I could possibly be suffering that muchand I thought that the pain or some of the pain was in my head. I know differently now and trust me, I tell people when I am in pain. I may, hypothetically, even write a blog about it.

Individual pain is a hard thing to describe to another person, because everybody has different barometers, just like my pain barometer post August 2012 is different to my barometer pre August 2012. I suppose it is similar to the age old adage, that a man can never understand the pain of childbirth; this is something that I too may not understand now, but that is a story for a different post. Although somebody did leave a comment on this blog the other day saying bone pain is worse than being in labour, so, I now have one up on all those women who can definitely have children. Ha!

I frequently talk about the pain caused by My Myeloma on this blog. I talk about it frequently because I am in pain frequently. I feel pain everyday. And that is with pain management. My pain reminds me of My Myeloma everyday. For your personal myeloma education, the pain is coming from my bones, specifically from my bones unfortunate enough to have been weakened with lesions. I don’t know how many of these I have, but I found out last week that it is more than seven, from my hip up to my neck including four vertebra.

Before I get into My Myeloma Pain present, I think it would be best to rewind to My Myeloma Pain past, before I started my treatment and the disease stopped spreading around my bones and before I had to take 60mg of morphine a day, but more crucially, before the pain management started to work.

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Hospital – The Worst (hopefully)

Before I was fortunate enough to have the kyphoplasty and found the right dose of morphine, my pain was immense. The pain was so bad, that I could not get up from the toilet without using the support handles and a zimmer frame, and when I was finished on the toilet, I could not pull up my pyjamas if I was stupid enough to have let them fall below knee height. The pain was so bad, I was embarrassed to let some people see me get out of bed because I could not have them see me differently. Turns out, most people see me differently now because I have cancer. The pain was so bad, Mamma Jones had to wash me because I could not wash myself or get myself dressed (trust me, the pain must have been bad, because us Jones’ are not a naked family). The pain was so bad, that one day I suffered the humiliation of getting stuck on a commode naked from the waist down. The pain was so bad, I still have a fear of lying completely flat.

At least, after my diagnosis, I knew why I had been in so much pain. In the week prior to my admittance, when my pain was getting progressively worse, I felt like a fraud and I was making it all up. I was on sick leave with back pain, and trust me, I did not want to be that person. I spent a week lying on my sofa all day watching the Olympics wondering why the Co-codamol and other drugs were not working. This is the only part of having cancer that I am grateful for. Knowing I had myeloma, meant understanding my pain and realising that I was not making it all up and the week I took off from work was justified. The day I was sent home from work because I was visibly in pain and slurring due to my then medication, was acceptable because I have cancer. I did not find it acceptable before that point; I was embarrassed by it.

Fast forward – Then, on the 24 August, I had my little operation, my correct morphine dose had been established and things started to get better…

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The Present – Living With It

Slowly, since the start of my treatment, I have seen an overall improvement in my mobility, which essentially means an improvement in my pain. So much so, that I experimented last week with reducing my morphine to 55mg a day, but then I was in more pain last week, so today, I am back on the 60mg. I will keep seeing if I can reduce the medication, because I want to test if I am getting better. You may think this sounds silly, but I need to know that I am getting better.

When I was released from hospital, I could not bend down at all or lift things, when I say lift things, I am referring to a pillow or a pan. There were several other things that I couldn’t do, but I think you get the gist. Slowly, but surely, I can do more. I can use the oven and I can access most of the sections of my fridge without the grabber. I can feel it when I do these things, and somedays, I can feel it more than others. On days when my pain is more severe, I will use the grabber and use my stick (I try not to use the stick in the house on the advice of my Doctor), I also take more drugs.

In the last week, I have been more aware of my pain and that may in part be because of my experiment, but I do not think it is. My hip pain started the week before and I will find out on Wednesday just how the radiotherapy is going to work. My hip pain, though nothing compared to what I felt in hospital, hurts and there are times when I have to lift my right leg into my bed, just so I do not have to feel the pain of lifting it like an able bodied person would. I get new pains, and maybe this is because I am so much more aware of my body since my diagnosis, but every time I get a new pain, I worry it is a new lesion, or another fracture. Last Friday, somebody hugged me too tightly and it took until the following day for the pain from that hug to go away. Even with pain management, I am fragile. I am now fragile. My pain today and for the last week has felt like the pain I felt when I first went to see the GP in June, and this will most definitely be a topic for discussion with I meet with my Consultant on Wednesday.

Now, I do have extra pain medication to take on days or periods in a given day, when I am in more pain. I have Diazepam, which I will take and I have Oramorph (liquid morphine taken orally for instant pain relief), which I will not take. Right now, at this point in my treatment, when I can feel my health improving, I would rather be in pain then take the additional medication. You may think this sounds crazy, but I have no intention of taking Oramorph again. This may change, it is not a categorical imperative, but right now, I would rather be in pain then have my senses altered further. Oramorph, I discovered makes me scatty and I think ‘scatty’ is being kind. It is difficult enough staying lucid on the drugs I am on without throwing instant morphine into the mix. I want to be able to converse with people and watch a film from start to finish more than I want further, temporary pain relief, and that is the end of it. Maybe, therefore, I deserve to be in the pain I am in, because I am not taking some of the drugs I have been given… And if that is the case, I will just have to deal with it. I just hope that as I progress through the cycles the pain will reduce, like it has over the last five weeks.

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The Future – ?

I have no idea how my pain is going to evolve as I go through my treatment and beyond. I have a wish list. I want my mobility to return to full working order without drugs. I want to be able to bend down and not feel anything. I want to be able to sit up from lying down and not feeling anything. I want to be able to walk more than a mile and not feel anything. I want to be able to sit in a moving vehicle and not feel speed bumps and pot holes ricochet up my spine. I want to be able to lift something that weighs more than 1lb and only feel my strength….

I just don’t know when all of this will happen, if it can happen. This terrifies me.

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Still reading? Well done. Five Gold Stars.

In the meantime, I will soldier on and hope and will the pain to go away, and encourage those kind Medically Trained People to do all they can to fix my weakened bones with their fancy ways (without exposing me to too much radiation, I am not ready to become a comic book character just yet).

I hope you know about pain now…. Well, maybe just My Pain.

Done.

EJB β™Ώ

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