Tag Archives: bones

Ever Increasing Pain

The quick deterioration of my movement over the last month, has been an unwelcome surprise and it has been something of nightmares. Cancer I can handle. Being bed ridden and unable to climb into the shower? Not so much.

Two months ago, I was worried that my movement had improved to such a point that I could not in all honesty, carry on without contacting the Department of Work and Pensions. Of course, I still had my good and bad days, but on my good days, I could challenge myself. I could almost feel normal.

Then there was a wake up call. A big fat, need my walking stick to get off the toilet, wake up call.

I am now at a point where my movement is so restricted that in the last few days, I have been bed bound, tripping out on a healthy cocktail of Oramorph and Diazepam, contemplating the meaning of life. Needless to say, I enjoy this return as much as I enjoy a Black Forest gateau with extra cherry. In case you were wondering, I do not enjoy a Black Gateau and I most certainly loathe the cherry that any extra would be a waste.

Forgive the length, but the following is an honest assessment of my recent dealings with Mr Pain;

Monday 12 May 2014
I was in Rome, and somehow, I managed to walk five whole miles. It was accompanied by lots of complaining and ounces of pain, but I did it with bells on.

24-27 May 2014
In an act of dogged independence, I repeated Rome’s sightseeing in Berlin, only this time, I did it whilst carrying luggage.

Evening of 27 May 2014
On a train from Southend Airport to Stratford, I decided to lift a 9kg suitcase. This was an error in judgement, I know. The truth is, I forgot that there was a reason why I should not be doing heavy lifting. Subsequently, on a train from Stratford to Dalston and then on the short walk home, I realised that I could not use my left shoulder. The pain was unbearable and it remained so for the next three days.

Thursday 29 May
I had an appointment with the Medically Trained People, during which, I received a royal telling off for doing too much. Fortunately, as the disease was not active, the pain was believed to be muscular. There was another telling off and I was sent for an X-ray or two.

I started to write a blog about me being a forgetful fool. It was full of mega LOLZ, so I apologise for declining you of that gift. As X-rays were a novelty, I also took these rather attractive photographs reminiscent of days gone by.

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The X-rays revealed nothing. I however, had to resort to the dreaded Oramorph to allow me to sleep. It was Oramorph by night and a sling by day.

And then the pain slowly went away.

Friday 13 June 2014
The day started with me starting one of my usual, riveting conversations with Housemate. It went along the lines of ‘do you believe in Friday the 13th?’. He said no, and that was the end of that.

Shortly there after, a sharp pain appeared in the middle of my back to the right. The pain was such that I could not bend. I could not laugh and I struggled to sit. In short, it felt very familiar to me and I was worried enough to inform the Medically Trained People. The pain was also such that I once again, reached for the opiates. I also started double dosing my standard MST dose twice a day from 30mg to 60mg.

That day, was Velcade Day, so I was seen by another Medically Trained Person who tested my leg movement, advised bed rest and sent me for another X-ray. The x-ray had to be done in Accident and Emergency, which is only noteworthy because I had to strip in front of the radiographers. I was wearing a pair of flesh coloured Spanx, so I am sure they enjoyed that. The pain was such that I cried and went home to cry some more. I was offered a hospital bed, but I declined.

Sunday 15 June
The pain persisted, shooting up my spine whenever the opportunity presented itself. I say opportunity, what I mean is, whenever I breathed. It is difficult for me to give an objective opinion about my pain, I’ve had it for too long to be able to describe it. I knew that this pain was different because every time I attempted to get out of my bed, my back felt like it would snap in two. Every time I stood up.

I phoned the on call Haematology line, shamefully, with tears once more and I was advised that my X-rays were fine. I was told that there was nothing that they could do, and I could take more Oramorph and paracetamol. It’s not important to my tale, but the person I spoke to had a speech impediment and every sentence was followed by a low snigger. It was most irritating.

Monday 16 June
The pain had eased slightly, but I was asked to come into Clinic on the 19th. Turns out that appointment was not about my pain, but to be safe, a MRI was ordered.

Tuesday 17-Saturday 28 June
I went into my overdraft using taxis to get me from A to B and back again. On the two occasions when I attempted public transport, I regretted it so much, it reminded me of the last time I accidentally ate a Black Forest gateau. Plans were cancelled, and I spent a considerable amount of time in bed, hating myeloma and everything it stands for. I made empty promises to myself that I would stop pushing my body, for I believed that if I stopped pushing my body, all would be well and my muscles would behave.

During this time, not because I am a badass, but because I value my brain, I chose not to take any Oramorph. I chose functioning over pain. I functioned barely, for there is only so far one can afford to travel by taxi. Peckham Rye, for example, was a no-no.

My physiotherapy was cancelled indefinitely.

Sunday 29 June
I woke up, intent on travelling to Cardiff. I sat on a seat it is customary for all Western Europeans to sit on in the morning and with that act, I screamed as a shooting pain made itself known from my lower spine reaching all the other parts of my body. It pulsated. I stumbled to my room and cried out in pain. I could not describe it, but at the point it happened, I would rate it as a 10 on the medically accurate pain scale.

To cut a long story short, phone calls were made and before I knew it, I was in A&E once more, this time with the privacy to change into a gown, awaiting an X-Ray. Whilst waiting, a finger was placed up my anus.

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The pain was unbearable.

I went for the X-ray, pleased that the technology has advanced enough that I did not need to get out of the trolley. The technology has not advanced enough to get a clear image, but that is by the by. My spine was all a spasm.

Once again, I was offered accommodation, but I chose the comfort of my bed and my flat over a shared ward with old ladies and their commodes. I was prescribed frequent, strong painkillers and home I went. I remained there, spaced out until this morning.

Tuesday 1 July
Today, I had me an MRI scan. It was less painful than I anticipated, but the two diazepams I took prior may have had an impact on my perception of time.

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And now I have to wait… There will be paranoia and there will be pain. I just hope that we will shortly get to the bottom of this.

Myeloma is incapacitating. It needs no further encouragement from spinal difficulties. I will manage my treatment, I do not want to manage the pain on top of it. The pain, this pain, prevents me from living.

I hate it. No roller coasters I can handle. I need to roll over in my sleep.

EJB x

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Just Dance

Picture the scene. You have not seen many people for a while and this is difficult because you constantly seek and need acceptance, attention and love to validate your existence. Your body is weak following weeks of doing very little. You have lytic lesions and as a result, have lost your rhythm. You are bald and obese and female. Your six year old niece hands you a remote control having just found ‘Jailhouse Rock’ on ‘Just Dance 4’. She says it is the song for you because 18 months ago you did a silly dance in the car to ‘All Shook Up’, and since then has decided that Elvis Presley is your favourite singer in the whole wild world. She says dance. You become anxious.

What do you do?

What do you do?

Throw sense out of the window and dance of course. Sod long term damage. You dance with a remote control in your hand. You feel warmth in your stomach as she bursts out laughing and runs to get more people to watch you strut your stuff in front of the television. You become competitive and want to take down the computerised man shaking his hips and right hand on the Wii. You keep ‘dancing’. For four minutes. You experience the most exercise you have experienced for seven weeks. You then have to lie down, such is your capability.

Cut to two days later and what do you get? Pulled muscles. Pulled muscles in your arms. Pulled muscles in your hands. And a stiff neck. Every time you move.

You have been warned. Game consoles are dangerous. They are especially dangerous when one is rebuilding their body after a stem cell transplant, cannot stand for longer than half an hour and gets a sore wrist from using their beloved walking stick due to lack of use.

Personally, you wouldn’t catch me doing it. No way. Not even. No.

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The Roller Coaster

It is something that has been in the back of my head since all this nonsense started, but this last week, I finally acknowledged the sad truth. I, Emma Jane Jones will never be able to go on a roller coaster again.

[sigh]

Sure, I was not going on one every week, but I enjoyed the occasional trip on a thrill seeking adventure ride. I do not think I am the sort of person to grow out of it. I know this because Big Sister is older than me and she went to Alton Towers last week. I was quite jealous.

As with anything I am told I cannot do, I want to do it even more. I want to be strapped in, spun around, go upside down and more than anything I want to feel that nervous anxiety in my stomach just before the ride takes off and then again when you come off it and wait to see how hideous one looks in the photographs taken at the worst possible moment. In this circumstance, I usually look like I am pushing out something really big whilst being incredibly comfortable with my double chin.

It is indeed sad that I am now one of the people to whom the warning sign at the start of each ride’s queue, applies. I have a known back problem. Sensibly, if I will not step outside my front door when it is icy, I am most certainly not going to run the risk of paralysis by giving in to childish fancy. This sort of thought probably goes against the key principles of the roller coaster. You are not supposed to think about being a grown up when you are going on something designed to make you feel sick.I have to. And that is the sad truth.

The most frustrating thing is that I spent a period of my life, morbidly obese and thus unable to go on some of the really scary rides because I could not fit in the seats. That my friends is a very embarrassing true story. If only I had known what was to come. Potentially, I would have lost weight sooner and taken up residence at Thorpe Park. After I lost weight, I got to spend a wonderful three days with my family in Disneyland going on all the rides they had to offer and stuck two fingers up at the Tussauds Group, by giving them my money and going on all their rides. It was so much fun, it is was mindless and I felt free.

Now, My Myeloma dictates that this sort of fun is no longer possible for me. Unfortunately, any thrill seeking is going to have to be done by broadening my mind. Fun.

EJB x

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Boney Joney

There have been few moments since I was diagnosed for me to celebrate. Diagnosis, fractures, chemotherapy, hair loss, nausea and fatigue have been my rewards thus far. Sure, I have celebrated when my paraprotein’s gone down, but with hindsight, my previous celebrations have been premature. I celebrated after the first cycle because I got a 35% reduction, but then the reductions slowed and the level plateaued. I got to have Christmas with my family because it went down by three, but the end result still means that I have to have a stem cell transplant, just three months later. In the long term, this may be to my benefit, but we do not know that yet, so I am keeping those celebratory flags in the loft for now.

On Monday however, there was need for a balloon or two, or maybe a slice of cake, for cake has more purpose than a celebratory balloon. It smells better. Getting good news is rare, so I had a day of relishing in it.

On Monday, I got my MRI results. Not the full results, I am still to do that, but I got the headlines. The hardest thing I find about living with myeloma is that in addition to the disease itself, I have the pain. Correction, ‘chronic pain’. Must not forget the Chronic Pain; it’s been my friend these eight months at least. I always think that the disease would be easier to manage if I could bend over or do a jig, but alas, myeloma does not give you the option of one or the other. I get branded by cancer and I get pain. Silly bones. Silly lesions. My Myeloma.

It’s not all doom and gloom though, for that is not how I roll. I am Glass Half Full.*

On Monday, I found out that my bones have not got any worse since my first scan in AugustYay, party. In fact, my bones have improved. Yay. PARTY. The treatment I have been on, as well as giving me a partial response has started to mend my bones. I do not know the full results, but I imagine, that there is still a long way to go, and I shall be in a relationship with morphine for a while longer. But if it stays the same, I can manage it. I have got this far.

As annoying as the bones are, knowing that they are improving offers me an immeasurable amount of relief. I live in a constant state of paranoia that every turn of the head, every click of my neck, every digging pain in my lower back, is a step closer to paralysis or a sign that It is getting worse and the Medically Trained People have missed something. Knowing it is getting better, at whatever speed it is getting better, makes me feel better.

My results buy me some peace of mind.

My results, as silly as it sounds, lets me focus more clearly on the next hurdle, on my transplant.

Thank swear words for that.

EJB x

* Excludes drug enhanced mood swings, premenstrual tension, tiredness and hunger.

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Snow ⛄❄

Once upon a time, I used to love the snow. I do not love it anymore.

The current nationwide obsession with the weather is clearly an overreaction. It may be below zero, but this is not an Apocalypse. For me, and this may also be an overreaction, the snow represents incarceration. I am a prisoner to the snow and this is partly due to me being sensible and partly because I am scared of it.

My mood up until Friday was pleasant. I was not thinking about My Myeloma, or my treatment, I was just getting on with things, and when the snow started, it put a dampener on all of that. I have not left my flat since Friday, and to be honest, I have barely left my bed. I knew the snow was coming, every media outlet told me so, and I prepared for it. I panic bought and my flat is full of activities to keep me occupied. I have not done anything. I do not have the inclination to do anything and that is the snow induced depression talking. I have had days where I have stayed in the flat for longer than this, but that is not when I have felt this well. I feel reasonably healthy right now, and that is making this prison so much worse. My addiction to social networking is also making it worse. I see images of people having fun in the snow. In my pre-myeloma days I would have been one of those people. I would be making snow angels or taking a walk with my wellies on listening to the powder break beneath my feet with my imaginary boyfriend or A Twin, but I cannot do that now. I cannot pop into the pub after a winter walk to warm up, because I cannot go for a walk. I promised people I wouldn’t.

My experience of the snow amounts to this:

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On Friday, my wonderful break was interrupted by having to go to the hospital, which obviously reminded me of the fact that I have cancer. By the time I was at the hospital, I did not need to be reminded, the fear I had leaving my front door and getting into the ambulance was enough. A normal person could slip on the ice and break a bone. I do not know what damage I could cause to myself and this is constantly in the back of my mind and the reason I am still in my house. Such was my concern about the outdoors that I considered not going to a dinner in the evening because I did not want to chance a fall. Instead, with agreement with my friends, we settled on me walking slowly, accompanied. I had to be accompanied like a child. The whole affair made me feel like a pathetic little child, who is afraid of the snow. It was then that I decided I would keep my promise and not go out again.

If the snow was not enough to send my mood south, I had the hospital appointments with the inevitable waiting and anxiety, and the dinner. Not through anything my friends did, but more because I felt like I could not offer anything to the conversations. Try as I might, My Myeloma has changed me. Anything new from me is related to My Myeloma and this is not what people want to hear on a Friday night. It is important to me, and the things that can impact upon it. When one of my friends told me in jest that me talking about the weather was boring, I do not think she understood just how much this weather is creating a storm in my life and thus, how much it means to me. I talk and I think about it, because it stops me from doing things that I used to take for granted. I long for the day when the matter of boys and going out are at the forefront of my mind, but on Friday, it was clear to me that they are not and I do not know when they will be again. I cannot expect others to feel the gravity of my situation like I do. Others cannot understand how a comment or conversation would upset me, when I hardly know it myself, plus my sensitivities change daily. I am an emotional roller coaster. I am my own Nemesis. Since my diagnosis, the hardest thing to get my head round is realising that everybody else’s life goes on, even though mine does not.

I have spent most of the last 48 hours thinking about how boring I am and the paranoia has been in free flow. I cannot help but think that I am dull. At least the tears were hidden on Friday. If I cannot have fun with my friends, who can I have fun with?

I am frustrated because my imprisonment may appear like an over the top reaction, much like this spiral I have found myself on, but the stakes of me leaving the comfort of my flat are high.

It is what it is however and I have to deal with it, I just wish that I could do so without feeling sorry for myself. It’ll get better, starting around…. Now.

I blame the snow. It’s all the snows fault.

Bring on the rain please. ☔☔☔☀☔☔☔

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Testing

Friday, was a Test Day. For the first time in what seemed like a long time, I made my way to UCLH and let people prod me.

The first test of the day, and one that came later than scheduled due to the snow, was the much anticipated MRI scan. In the week leading to my scan, I had managed to get myself into quite a panic, based on the fact that my first MRI scan was so horrible. I did not think that I was capable of enduring the same level of pain. The second test was a straight forward ECG. The only challenge I anticipated with that one was the walk in the snow from the Macmillan Cancer Centre to the main hospital.

Last week, I had been going back and forth in my mind whether to do the deed with the aid of drugs or without it. I went as far as requesting the drugs, but then within a few hours, I had changed my mind again. Cancer related issues really are magnified. My Big Sister rightly pointed out that if I did take breakthrough pain medication for my scan, I would always wonder whether I could do it without. So, like removing a plaster, I opted for no drugs. It would appear that I like a challenge. I chose wisely.

Once I had managed to actually get to the hospital, after a wait of two hours, I selected the really cool and edgy tunes I was going to listen to in the coffin, before stripping. Despite having to have worn quite a few now, I still find it marginally exciting when I have to put on a hospital gown. I personally think they are beyond sexy. Nothing says attractive like a patterned gown covered in stains that opens down the back to reveal ones cellulite and lace knickers. The fact I was wearing them, was not a coincidence.

Some of you may not know what an MRI scan is. I am still not sure what sort of imagining it provides, but I do know that you have to fill out and sign a questionnaire to confirm that you are not pregnant and that you have not swallowed anything metal, there are more questions, but you get the gist. I also removed all my jewellery, just in case it is cheaper than I believe it to be. My friend asked me last week whether it is the machine that looks like a donut. I responded with a “no, that’s more like a CT scan”, but as it turned out, my memory of what an MRI scanner was like, was thankfully, flawed. There was literally light at the end of the tunnel. The machine before me eyes on Friday, did indeed look like a donut. An incredibly dense. I swear the first machine, did not have a hole at both ends, like this one. The room also seemed brighter, perhaps that is because I was not on any medication and thus, I was not as high as a kite.

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Artist’s impression

Nervous, I got on the slab and was relieved to feel foam and not metal. I informed the technicians of my album of choice and that I may have difficulty getting up at the end. They put the panic button in my hand and the headphones on my ears and in I went. It was much better than last time, instead of resembling a coffin, I saw The Light. It was beyond bright in there. The Greatest Hits: Volume 1 by Queen attempted to drown out the noise, but failed miserably. At least it made the 40 minutes pass quickly enough. There is nothing like listening to ‘Another One Bites The Dust’, while being greeted by a bright light and loud banging, to make you think about the meaning of life.

Halfway through the scan, I realised that I would be able to get up at the end by myself, and that I did without the aid of the two people (one had changed to a man, I believe to help with my weight). I was more than pleased with myself that I could do it and I braved the situation without the aid of Oramorph. Now, I have to blank out what the test will find, because it would be just my luck, if it picked up a tumour…

After that, I collected my drugs, after a half hour delay due to a clerical error and walked the short distance to the main hospital. It turns out that that was the scariest point of my day. I am not a fan of the snow. I hate My Myeloma for that.

The ECG was better than my first ECG which was a firm reality check on my first night at UCLH back in August. That test involved a lot of palaver with my pyjamas, bra and boobies, that my pride would not want to see repeated. My first impression on Friday, was that the lady taking the test did not have a considerable amount of job satisfaction. She was, actually, down right rude. “Naked from the top half please”, was her greeting. I complied with her request and hopped onto the bed. She told me off twice for not relaxing my shoulders, and then put the stickers on my naked torso with a fair amount of force. I asked her if she could not press onto my ribs quite so strongly because of the fractures and her response to that was to tut. Her care was amazing. Perhaps she had see me eat a Twix, okay two, whilst I was waiting and that sort of gluttony is frowned upon in Cardiology Outpatients. Once the test was done, she said “your nurse will get the results”, and with that she walked out the cubical into the next one and said the same things all over again. I must say that my favourite part of my ECG was when she picked up my left boob to put a sticker underneath it. That’s right, I said picked up. They are that saggy. In case you were wondering what an ECG looks like, I took a photo. It is a heart test.

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And then I went home and reminded myself that tests are so much easier than treatment. It’s just my overreactive brain that makes them worse.

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Forgetful

It is not a new revelation to say that I am forgetful. I forget most things, especially plans, which anybody would witness if they were able to see my face when my doorbell rings.

Today, however, I realised how easy it is for me to forget certain aspects of My Myeloma. I remember it as a whole, but day to day, I forget. Each day is as good as that day and what came before it is forgotten (unless it is the my good cylinder, I have to remember the good cylinder).

I am in good health today, I woke up refreshed and incredibly excited that Days 4-8 were over. By 09:00hrs, I had pretty much forgotten that 24 hours earlier having dressed for the clinic, I had to get back into bed and nap as I waited for my transport. So, I set myself a list of things to do for today, then failed miserably on most of it because The Lads comes round and helped me get in the festive mood instead. It does not take much. I had a marvellous time. Obviously, that is not the moral of this story. Popcorn and a satsuma does not a lunch make, and having done some physical activity, I was foolishly surprised to find that by 16:30hrs, I was beyond tired, nauseous and in need of my bed. Unable to understand why this would be happening, I telephoned Big Sister to ask why I should feel so ill. She eloquently explained that I had cancer and I had received chemotherapy just five days before. Then I remembered. I have cancer. I get tired. I need to nap.

Reminded of my plight, I lay down for an hour and let my world spin, feeling sorry for myself. I then remembered my to do list. It was time to bake.

For the last two weeks, after I returned to my 60mg dose of morphine per day, my pain has been well managed. I would go as far as to say that it has been very well managed. Remember now, I am only talking about a two week period, but in my mind, I have been “back to normal” pain-wise for months.The radiotherapy appears to have worked, and only this afternoon, I noted that I no longer have a need for my walking stick for anything other than protection. I have felt the occasional sharp tinge in my lower back, but that has been the extent of my pain. Morphine is dangerous. My pain has been so slight, that I have been able to witness the extent of the bone damage, and unfortunately this includes limited mobility in my left arm. If I had ever dreamed of being ambidextrous, those dreams would now be dashed. Shame. As I have not been in pain, I have been bending over, hugging whomever I want when I want , stretching and thrusting. Forgetting that I have bone lesions has been delightful.

After I had completed this evening’s baking session, which by the by involved some bending and light kneading, I sat down to thread some popcorn. The average Tuesday. I was enjoying myself. Yay. Enjoyment. It was a strange sensation. I then dropped a bottle of water on the floor and being a normal human being, I stretched out my arm to pick it up. As I stretched, I heard a “pop”. I felt it too. “Pop”.

And that was my reminder… I have cancer. I have multiple myeloma and with that comes bone lesions. Lots of them.

Never forget is the moral of this story. A thought of the day if you will.

In case you are on tenterhooks, the “pop” was located in my right ribcage. I have fractured a rib before because of My Stupid Myeloma and I do not need an X-ray to tell me that that is what I have done now, simply reaching out for a bottle of fizzy water. Beat that. It was a painful lesson; morphine is not a magic cure. In more ways than one, morphine has helped me to forget about this aspect of My Myeloma.

Remembering is a catch-22. Forget and I may get tired, nauseous and/or fracture something, apparently. Remember and I may get depressed and become more cancer obsessed than I am at the moment.

I should probably take some instant relief right now so I can sleep, but I fear that will make me forget even more. I will manage the pain for now, not because I am brave, but because it is safer. Starting tomorrow, I am going to have to reintroduce The Grabber. I had forgotten about that particular bad boy. One of my ribs has reminded me.

EJB x

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