Injured in the line of duty…

You might think that no posts from this quarter means no interesting news. You’d be wrong…

Mostly I’ve been so busy and so high and unable to concentrate due to the effects of steroids, that I’ve either not found/made the time, or not been able to harness my thoughts coherently enough to write blog entries.

My friends who use Facebook will have a better idea of what’s going on as I post regular brief updates there, but today I feel the need to share more fully here, so I’m taking advantage of a day at home to update my poor abandoned blog.

On Tuesday, I was volunteering with Anthony Nolan at a fundraising and recruitment event at the George Elliott building of Nottingham Trent university. The fundraising was being done via a cake sale, organised by Pam, who works for Anthony Nolan’s cord blood bank, on the university campus. The cakes looked gorgeous and the two I ate were really delicious and worth every penny I contributed… A chocolate fudge cake, made and donated by Beeston Bakehouse and a gingerbread square, baked by an anonymous baker. From the sale they raised £208. That would cover just two people to be signed up onto the stem cell/bone marrow register. Yes, it really is that expensive.

So, not one to pass up an opportunity, I shall shamelessly use this post as another chance to encourage you to register as a potential donor, or support in other ways, by volunteering, fundraising or inviting R&BE to come into your school/college/university/organisation to speak to students or any groups of people aged 16-30.

And again, if you’re over 30, you can sign up via the British Bone Marrow Registry, which is part of the Blood Service or Delete Blood Cancer.

Meanwhile, back to my story… I was busy going into the café to talk to students, giving out information about stem cell donation and the work of Anthony Nolan and where possible, encouraging them to sign up at our table in the foyer.

Recruiting or trying to recruit at a University is very different from the sessions we deliver in schools with Register & Be a Lifesaver [R&BE], where we usually get support from the school and teachers, where we speak to a classroom or lecture hall full of students, with a professional presentation, including a personal story, that generally has a very powerful effect.

For example, last week we were at Bilborough College in Nottingham – a place which has a long history of excellent support for Anthony Nolan and R&BE. A whole team of volunteers presented every day to all Year 12 students, followed up by a recruitment session on Friday afternoon. We succeeded in recruiting 140 new potential donors onto the register. When I arrived on Friday, there was a queue of young people patiently waiting to sign up and spit. With any luck, one of those may be a match for someone who’s currently waiting for a transplant, maybe even someone I know.

So, there I am, popping into the café, with my faithful photographer friend, Russell beside me, to capture some publicity shots of the event. I look around and head for tables with a number of people sat around. Speaking to a group is much easier and they are more likely to engage and ask questions, and if I speak to six or eight people, it’s possible at least one of them might actually sign up, and with any luck, encourage/drag their friends along too.

So around 11:30, I step through the serving area and down a single step to the area where people are sitting, chatting, eating, drinking, playing games. I boldly go up to a table and ask if I may bend their ears for a few minutes. So far, this strategy always works. I’ve never yet been denied, unless the students in question were rushing off to a lecture.

I spoke to a few tables, with a mostly enthusiastic response. Feeling flushed with success and needing a break, I began heading back towards the foyer. I didn’t remember the step and thought there was a ramp there, so I didn’t step up, but instead tripped up the step and landed on the floor, somewhat shaken and hurting my hand as I landed. Ow! It was sore, really sore and soon began to swell up. Charlotte, the Marrow Recruitment Manager who was responsible for the recruitment aspect of the event, kindly procured an ice bag for me from the First Aider on duty. I took two Paracetamol and spent the rest of the afternoon with the ice bag clutched onto my gradually more and more swollen finger/hand.

By 2:30, my hand was very sore, very swollen and my finger immovable. Fortunately, on site they have a student medical centre, so I went to the Sunrise Medical Centre, to find out if I could see a doctor. Fortunately I could.

While I checked in, I found out that my own much valued GP, Dr Carolyn Lott, is a part-time doctor at the campus practice. Sadly she is only there on a Friday so I saw one of the two full-time doctors, Dr Rashbal Ghattaora, a very pleasant, approachable man.

When he asked about my medical history and what, if any, medication I was on, I warned him this could take a while. I took a deep breath and reeled off my whole story and everything I’m taking, which if you recall is quite a long list, as mentioned in a blog entry I posted a few weeks ago, entitled Not Normal.

imageDr Rashbal dealt very well with my probably unexpectedly long narrative, showing an appropriate amount of respect, medical understanding and comprehension that the combination of myeloma, osteoporosis and steroids may have compromised my bone strength. His opinion, without any hard evidence, purely based on the colour and size of my now blueish fat hand, was that I probably had a fracture.

imageIn fact, he said if he were a betting man, he’d bet on it. He also said that the fracture might be in the finger, which would be easier to heal, unless it had dislocated, in which case it might require fixing with small wires. Yikes! Or it could be one of the metacarpals in my hand, in which case, I would probably need a cast.

He sent me off to have an x-ray before going to A&E, which is now called the Emergency Department. Having a referral to x-ray from the doctor eliminated the need to wait in Emergency beforehand, which was very thoughtful of him. Luckily, I didn’t have to wait long in x-ray or Emergency. Thank goodness it wasn’t a Friday night!

Fortunately, Russell, the photographer friend I mentioned earlier, had picked me up from home and driven me to the Uni and was able and willing to chauffeur me to the hospital. I may not have been able, possibly would not have been permitted, to drive myself. Russell was a real star. He not only drove me to the Park & Ride, but came with me on the MediLink bus to the hospital, sat with me in the x-ray waiting room, came down to the Emergency Dept. with me and sat waiting again while I was seen. Later he drove me home and came in with me to make sure I was okay before going home himself.

In another strange twist of fate, when I saw the triage nurse in Emergency, I mentioned living quite locally, in Attenborough, whereupon she asked which road. When I told her, she looked amazed and asked what number. We discovered that she used to live but four doors down from me and had only moved away a couple of years ago, with her twin boys, who I remembered very clearly and realised I’d not seen for some time. Unsurprisingly, they have not been at the forefront of my mind over the past couple of years. It was a nice little interlude.

Meanwhile, the x-rays showed that yes, there was a fracture to the proximal phalange of the middle finger of my left hand. To a lay person, that’s the first bone in the middle finger, from the hand to the first knuckle. My ex-neighbour simply applied a two-finger stretchy bandage to the fractured finger, splinting it onto the third finger. It’s called ‘buddy-taping’, which quite appealed to me. My two little buddy fingers helping each other out, like good buddies do. She gave me a sling and asked me to return to the fracture clinic the following morning.

I had two anxieties:
1. not being able to drive… My friend is working away and while I might be able to manage some journeys by taxi or public transport, the prospect was really not appealing and would make all journeys a lot longer and more tiring and ultimately would mean I’d have to give up some activities and commitments.
2. not being able to go dog sledding on my forthcoming trip to Finland in just four weeks’ time… and no insurance arranged yet. Bugger!

The next day, my relief was palpable when I discovered that I could in fact drive, with only slight difficulty taking the handbrake off and needing to use the palm and heel of my hand for gear changes. I drove myself to the hospital and turned up at fracture clinic, only to find that despite waiting at the desk in Emergency the previous afternoon while an appointment was made, it had not been entered on the system. I had to wait almost an hour to be seen.

imageFortunately, the doctor confirmed what the nurse had told me the day before, that all I needed was to keep it elevated and use a buddy bandage for the next four weeks and it would heal. Just in time for Finland! Hurray! I was promptly and happily discharged. Simple! Phew!

imageIt’s difficult to drive, prepare food, wash dishes, type, wash, get dressed. etc. with a hand in a sling. Even when not in a sling, many things are difficult, as I have lost a lot of strength in my left hand – temporarily, I hope! I’m not keeping my hand elevated as much as I probably should, but I do keep it raised when I’m at rest and I’ve been sleeping with my hand up on a pillow at night.

I’m glad to see that the swelling is gradually reducing, despite being such a non-compliant patient. However the colour of my hand looks much worse than it did on the day itself. I’m watching it change and looking forward to the time when the blue becomes greeny-yellow… Just for the variety!

A Bone to Pick

“Whaaaaa aw ma-a-a-n owwww! *@*#$%^#$%#(*(@$#^&$%!@*!()$#*^@!(#$$ [censored]” I screamed every expletive I knew and a whole bunch I made up. The world had gone completely white and was overlaid by even more brilliant explosions of light. My vision tunneled down to a pinpoint and then went dark. The pain was so exquisite I passed out from the sensory overload. 

My vision began to clear and I saw my wife bending over me and looking concerned and frightened. “What happened?” she asked.

A good question. I tried to think of an answer but I couldn’t seem to get my brain in gear. My senses were locked onto the excruciating pain and I was helpless to defer it. Every breath caused a dagger of pain that made my breath catch. I sounded like I had machine gun hiccups. “S-s-s-s-iddup. S-s-sudn p-p-pay.” I knew what I wanted to say now, the holdup was my inability to speak it.

“Take your time, honey. Tell me what happened.”

“Was laying. Here. Sat up.”

“You were laying here and sat up? Is that it?”

I nodded. “F-felt like a t-tick. Click. D-d-dunno. Then h-h-h-urt. Ohh ma-an! F-feel like b-b-broke-ken r-r-rib.” I was shaking and pumping sweat. My wife ducked into the bathroom and came back with a wet washcloth and laid it across my forehead. The coolness made me wince, the wince sent electric jolts of agony. I started swearing again but the words were so broken as to be unintelligible.

“You’re so white –you’re almost gray. Blue. Jesus. You think your rib is broken? We need to get you to a hospital.”

“Feels like i-it. I d-don’t know. Gedd-dd m-muh p-pain m-meds and wah-wah-water.” She moved off to do as I asked then sat with me as we waited for the morphine I took to kick in. After a half hour I took more, not getting a lot of benefit from the earlier dose. I had her help me to sit up, pushing the buttons on the bed controls to boost me into an upright position. That helped more than the drugs did, somehow relieving the pressure that felt like someone was using a cargo hook to rip my ribs out of my chest. Finally I could take breaths, little ones, without feeling like the hook was being twisted. By the time the pain had been dulled enough that it was only super uncomfortable, I’d tripled my standard morphine dose and added some dilaudid and aspirin as well.

Sunday I gave thought to going to the VA hospital. But on weekends they have minimal staffing. I do mean minimal. A doctor, a nurse and technician, a radiology shooter and a lab tech to do blood tests. It would tken them 8 or 9 hours to deal with an issue like mine only to tell me I had to come back Monday when the hospital was fully staffed. I elected to stay home and wait for Monday so I liberally dosed myself with narcotics and tried to read and catnap the day away. It accomplished the same end as if I’d gone to the medical center –but avoided the pain of travel and in-hospital shuffling about.

On Monday the hospital was jammed. It was always jammed these days what with the many satellite clinic closures bringing people in from western Montana, north Idaho and eastern Oregon in addition to the eastern half of Washington. But Mondays are the worst for some reason. There’s construction everywhere as the hospital gets a couple of new wings and a tremendously expensive cosmetic face lift. Everyone wishes that the VA bigwigs would spend money on more doctors, nurses and equipment to handle the quintupling of vets seeking help, but the politicians are dead set on having the prettiest understaffed hospitals in the world. Still, the people working there, the doctors, nurses and techs are pretty good and dedicated. Within two hours I’d been xrayed and prodded and checked out. Pretty darn good for an ER with standing room only.

“Your suspicions were right.” said the doc. “You have two ribs that show fractures. Looks like lesions weakened the area. I have to tell you, and I know it’s shitty, but there isn’t much we can do. Just keep you as comfortable as possible and stay as immobile as you can. Use your pain meds as needed.” Lesions are extremely painful at best, often exposing nerve endings and irritating them. It’s similar to an abcessed tooth, the nerves of both the teeth and the jawbone get irritated. It’s some of the worst pain the body can develop.

“You can’t tape him up or something? Give him some support?” asked my wife from behind me.

“Nah. I mean, if he had a full separation we might use an appliance to immobilize or stabilize the ribs. But this is more like -uh- more like a spiderweb crack in a windshield. Putting pressure on it would just make him more uncomfortable and probably make it harder to breathe.” said the doctor. He shrugged. “I’ll send this up to oncology, I mean, I’m sure they’re going to want to know.” To me, “You should call them up tomorrow and see if they want to do anything. Like I said, it looks like a lesion there. They may want to go proactive with treatment of some kind.”

“This is going to happen again, isn’t it?” I asked. 

He shrugged again. “Maybe. But maybe not. Breaking ribs happens a lot with Myeloma cases. It’s just one of the aspects of the illness. It’s a bone cancer after all.” He bid me good luck and we were dismissed. The pain had been creeping up, becomming more intense and so I stopped by the drinking fountain and started fumbling with vials.

“What have you got there?” asked my wife.

“I’m popping some morphine and also some senna and docusate.” Morphine dries the system out and so constipation becomes a big deal. I’d learned the hard way to take laxatives and stool softners when I increased pain med doses. It helped most of the time, but others not so much. When it didn’t happen I would have to try lactulose, the Sherman tank of laxatives or at worst have to use an enema. Comfort definitely has its price.

As things sit now we’re waiting for a CT scan. My doctor ordered a hunting expedition to look for lesions or weak areas. We might be looking at radiation treatment to kill the lesions, but killing them kills the bone as well. I’ll have to wait for the fractures to heal before I can take that kind of therapy. If the bone is dead it won’t heal. Even so, with a lesion at the fracture site, healing may be a moot thought anyway. Plus, the cancer affects osteoblasts and osteoclasts, the body mechanism for creating and absorbing bone mass, so no matter what, this is a rough situation. No matter what, there are obstacles to healing. No matter what, this really sucks.

The Pain Game

I do not think I have any right to complain about my pain. I have the right to complain about My Myeloma. Not the pain. Not right now.

The truth is, and this has been the case since last October, that the Medically Trained People have given me additional medication to alleviate some of the pain. That medication is called Oramorph. I would have mentioned it before, such is my distaste for the stuff. See for yourself http://ejbones.wordpress.com/2013/01/13/oramorph/.

The difference between now and then, is that I have taken Oramorph since. I took a lot if it in fact, during my 12 night stay with T13′s Angels. My reunion showed me, by slapping me in the face, why I should not take the stuff unless I absolutely, positively, cannot open my eyes due to pain, have to. Despite the pain I am experiencing now, it is not the time to take it. I do not need another cause of fatigue and delirium, and that is what it would give me.

At the moment, the benefits of the ‘morph are far outweighed by the disadvantages. I absolutely would like some temporary pain relief. I really wanted it a week or so ago when I had lady cramps rivalling childbirth. Morphine for period pain just did not sound right. In the end, as I am not allowed to take ibuprofen anymore, I settled for codeine (after checking with a Medically Trained Person). My life would be easier if I did not experience pain, but Oramorph does not just reduce pains, that’s right, plural. Oramorph makes me slur, it makes me sleepy, it makes me groggy, it makes everything appear fuzzy, and as I experienced in hospital, it can make me hallucinate.

Recreationally, some people, not me for I missed that boat and my addiction to beer is enough, would enjoy some of those symptoms, but when one is already feeling shite, it just gives you further reason to feel shite. The icing on the cake now, is that I need to take a fairly hefty dose for it to have an effect on the target area. After all, I have taken a form of morphine everyday for a year and two days; I have tolerance. Most the time, if I do not skip a dose or am I voluntarily trying to reduce it, I take 60mg of it a day. I was told by the Medically Trained People that this resulted in me needing more of the liquid stuff when I was in dire straits. Essentially, I am a druggie. I suspect, without any medical proof or advice, that this is why I experienced the other side effects so keenly.

Do not get me wrong. I like the feeling of loosening up, maybe even losing a bit of control with the help of substances. By substances, I mean alcohol because I am a square. Maybe not a square if you have seen me when I am drunk. The feeling morphine gives me, is far beyond a loosening up. It’s like I have tinnitus of a floating body.

If you had not guessed or did not know, morphine is a controlled substance. If for any reason I was to visit a prison, I would not be allowed it in my handbag. That fact it is controlled makes you know it is strong. I intend to make a punch from it when I am done for my guests at a mature and grown up party. Not really Pharmacy. I am very sensible with my drugs and follow all the rules. I concerned myself early on that morphine was controlled for a reason and in it’s breakthrough forms, was addictive. This just have me further reason to stop last Autumn. Four addictions was enough already (cigarettes, beer, fizzy water and EMan). I do not need anymore.

Most importantly, and this is what is overrules the pain, I want to be able to think and speak like I have thought. Oramorph does not afford me that pleasure. I had two days in my cell, where I had spent hours feeling and looking like I was about to give birth to an energetic octopus, so gave in and asked for the ‘morph, which resulted in some pretty funky dreams. They were not dreams, for I was awake. I know O was awake because on one occasion, my vision carried on whilst I got up and pooped the green.

My special trip felt like it went on for hours. I have no clue of it’s actual duration, but it clearly derived from the pain I was in. I imagined there was an entire planet inside my stomach, which existed within a red theatre with stalls, circle, a dress circle and an upper dress circle. The planet was made up of ants who were appeared human, who walked by playing the drums. It went on and on and on. The more it went on, the more uneasy I became. I do not recommend it. The following day, I knew, that Oramorph and me, should only go together in a controlled environment.

Aw, the choices we have to make. I choose me.

EJB x

P.S. I maintain that I can withstand a considerable amount of pain, especially with the MST. Myeloma did that for me. I guess, pain in itself, does not scare anymore, not after the fractures and all the pokings. That said, the all consuming pain experienced during my menstral cycle, which was post transplant and post artificial mess me arounds, was surprisingly. Women and men, I can honestly say, that the pain of that period was on par with my first rib fracture. I may even have preferred the rib fracture. True story.

From above

The title of this post comes from last week’s photo challenge on the Daily Post at WordPress: From Above – Change your perspective on something. Share a photo
of a subject which you shot from directly above.

Inspired by the challenge, here is my photo…

IMG_1117What on earth is it?

Well, it’s me of course… from above.

To be precise, it’s me with a new haircut (more on that later)… from above.

More disturbingly though, it’s me, even further from above than I ever was…

Yes, it’s true…

I have just found out…

To add extra enjoyment to your blog reading experience, please play this video…

I am shorter than ever before…

I have lost height!

I have never been particularly tall. In fact, you could say without fear of contradiction that I am petite. Even in England, a country that isn’t full of statuesque Scandinavians, towering Teutons or mighty Maasai, I am a bit on the short side. However, when I say short, I only mean that I measure 5’3″/160cm. It’s not exactly a talking point. People do not stop and stare at the short woman.

According to Wiki, dwarfism in humans can be defined as an adult height of less than 4’10″/147cm, so it’s not like I have any sort of dwarfism. I’m simply a tiny bit closer to the ground than the average British woman – but not by much, it turns out…

I’ve done a little research to find out what the average height is for a woman in the UK and I’ve found different answers – an article on the BBC News website from 2010 states: “The average woman in England… was 5ft 3in tall.” The Wiki page on Human Height shows an average of about 163cm/5’4″, as do responses on Yahoo! Answers. I know, I know, none of these sites are especially reliable – well, maybe the BBC. Nonetheless, the point I am making is that at most I only fall an inch below the average height. That is, I did until the other day…

I had to attend a new clinic the other day, for an issue totally unrelated to myeloma. I will blog about it when I know more, but it’s nothing to worry about. As usual, measurements are taken and I found out that I currently weigh in at 65kg/143lb/10st3lb, which is more than I’ve weighed at any time in the past two years. I wasn’t particularly surprised as I had noticed a tightening of the smaller clothes I had to buy after losing so much weight when I was first ill and going through initial treatment. In fact, I was not only not surprised, but quite pleased – weight gain is a sure sign of recovering health… and plumpness! :)
(That is, as long as you’re not taking steroids, which along with other side effects, can also lead to weight gain… and plumpness!).

Imperial version: What I wasn’t expecting and which was a huge surprise was the nurse reading my height measurement at only 5’1½”! That’s 1½ inches less than I have been for the past 30+ years! That’s 1½” less than I always reply whenever I’m asked about my height. Well, no more it seems!

Metric version: What I wasn’t expecting and which was a huge surprise was the nurse reading my height measurement at only 156cm! That’s 4 centimetres less than I have been for the past 30+ years! That’s 4cm less than I always reply whenever I’m asked about my height. Well, no more it seems!

To her credit, the nurse tried several more times to measure me, with me facing different directions, straining to hold myself as upright and stretched as possible. It was quite laughable to be honest, but I appreciated her willingness. To my dismay though, every reading came back the same: 156cm. Unfortunately, I didn’t think to take a photo at the time. I really wish I had. I want proof!

I must have been measured many times over the past two years. Frequently treatment doses are calculated on patient size, which isn’t always only based on weight. How come I’d never before encountered having shrunk to 156cm/5’1½”?

So that’s it, I thought; I am a shrunken woman, a smaller version of myself – hopefully not a lesser person. And yes, I do know the adage that the best things come in small packages… but I was already a small package – I really don’t need to get any smaller. But, I figure, it’s not the end of the world, I don’t have a big issue, or even a small issue about it, just that it was a rather dramatic discovery.

Most people have variations in weight throughout their lives, even on a week-to-week basis at times. Most people though tend to attain an adult height and stick there until age/osteoporosis kicks in. Even then, I think the usual rate of height loss is about one centimetre every ten years and that doesn’t usually start until around age 50. I’m only 51!

As far as I know, I don’t have osteoporosis, but I do have myeloma and myeloma weakens the bones. Way back when I was first diagnosed, I had a full skeletal survey; in other words, a full body, head-to-toe x-ray. This was to determine how much bone disease the myeloma had caused and to gauge how likely I was to experience any fractures.

T7 spineIt was at this point that I found out I had a holey head: lytic lesions in my skull. Additionally, I had lesions in one femur, both humeri and my pelvis. One thoracic vertebra (T7 to be precise) was damaged and I had four or five fractured ribs. I’d not noticed anything other than middle back pain – that’d be the T7. It was also at this point that they told me I was at no further risk of fracture. I wrote about it here.

What didn’t happen at that time was any conversation about loss of height. I understood that the damage to T7 had caused it to become misshapen, but as I never actually saw my x-ray, I have no idea if it was fractured, compressed or just mildly wedged like in this diagram (not my x-ray).

I may ask to see my x-ray from 2011 when I’m next in clinic. I may even ask for a new x-ray to see if it has deteriorated further. I experience back pain in the same place almost every day and although it’s not severe, it does disable me at times, stopping me from doing certain things – some I can live without, like hoovering and washing up, but others I’d like to have a choice, like gardening and cooking/baking. I know that there are procedures that can be done to alleviate such pain and lessen the chance of kyphosis, so it would be useful to have a discussion about them, even if it’s to find out that they wouldn’t be suitable for me.

Anyway, today I was at Daycase, not for myself, but accompanying a friend who had to have some treatment. A great opportunity I thought, to get a photo of my decreased stature. So I popped into clinic and asked a nurse if she could measure my height, which she duly did. And then I asked her to take a photo, which she kindly did, with a curious look on her face…

Not quite as curious as the look on my face when she read out my height and showed me the photographic proof…

IMG_1154 IMG_1155

Yes, it really does read 158cm/5’2″! Can I have grown an extra 2 cm/¾” in the past week? I doubt it! Can two different hospital departments have different measuring equipment? Maybe all hospital measuring equipment is dodgy and I’ve not lost any height at all?! I am truly perplexed… but for now, I will believe today’s results and consider that although I have lost height ‘from above’, from my previous 5’3″/160cm, it’s not as much as I thought last week!

Now I’ve begun thinking of any possible places to have myself measured… Let’s hope it doesn’t become an obsession!

By the way mum, I know you will relate to this post in a big (or should I say, in a little?) way!

My haircut experience will have to wait for another update. This one is plenty long enough… or should I say a tall enough story?! ;)

Ferraro developed pneumonia

This is from the AP. Other reports mentioned only “complications,” which we now know to be pneumonia. It’s very common for myeloma patients to develop pneumonia.

Ferraro died at Massachusetts General Hospital, where she had gone Monday for a procedure to relieve back pain caused by a fracture. Such fractures are common in people with her type of blood cancer, multiple myeloma, because of the thinning of their bones, said Dr. Noopur Raje, the Mass General doctor who treated her.

Ferraro, however, developed pneumonia, which made it impossible to perform the procedure, and it soon became clear she didn’t have long to live, Raje said. Since she was too ill to return to New York, her family went to Boston.

Raje said it seemed Ferraro held out until her husband and three children arrived. They were all at her bedside when she passed, she said.

“Gerry actually waited for all of them to come, which I think was incredible,” said Raje, director of the meyloma program at the hospital’s cancer center. “They were all able to say their goodbyes to Mom.”