Category Archives: NHNN

Spine Points

Today was not a Bad News Wednesday!

This morning, I returned to the National Hospital for Neurology and Neurosurgery or NHNN as it is known in the inner circle, for a follow up appointment to the kyphoplasty I had on 24 August. You may recall that I had fractured my L4 vertebrae and some nice people decided that putting some cement in the fracture was the best option for me. As it turned out, it was.

If you want to know more about the procedure, revisit the post drafted from my hospital bed way back when, when I was a Cancer Novice… https://ejbones.wordpress.com/2012/08/24/cement/

I was nervous about today. Back in August, I was not given a real opportunity to discuss the procedure with the doctors, before or after the operation. In terms of the operation’s ‘success’, all I knew was what I felt and feel. I am talking about the physical here and not emotional; do not be alarmed, this will not be one of those posts. Physically then, I am in less pain than I was on the 23 August. The pain that I had experienced in my lower back has almost gone, sure, some other pain has decided to appear in its place, but the lower back? On the Official Medical Pain Scale of One to Ten, my lower back has gone from an 8 (I am well hard) to a 2 and maybe even a 0.8 on a good day. If I am honest, I also knew that there had been some leakage of the cement during the procedure, and my consultant said in passing a fortnight ago that my spine was now ‘straight’. That was it.

That was all I knew and I have spent the last 33 days wondering whether my spine was still at risk of a collapse, whether there was still a risk of that vertebrae fracturing and me becoming paralysed. I just did not know. Nobody had said. As nobody had said, I did not know how much I could do and I have been overly cautious as a result.

My body, however, had told me that it was getting better, but then, my body has not been too reliable of late has it? So I am not yet willing to believe what my body is telling me. Not yet. We’ll make friends at some point, but right now, I feel like my body has let me down (if at midday tomorrow, my body gives me a ‘normal range’ full blood count result, then perhaps I might, might, start to come round). So, like I said, I was worried about my appointment, worried about what the Doctor was going to say about the long lasting impact of the fracture. Worried about the cement.

I am not going to drag this out anymore…The operation was a success. Hooray.

Today, I was told by an actual Doctor, the Doctor who was responsible for my operation, that it was a success. He even showed me before and after images of my spine to prove that it had been a success. I am just going to keep writing success, because my operation was a success. I still have to go for a further follow up in two months and my spine will continue to be monitored because, let us not forget that I have Multiple Myeloma and multiple lesions in my spine, but the operation was a success. Success, success, success.

It was fascinating to see the before and after scans, and to see why I was in so much pain. I do not know the medical terms, but in the ‘before’ scan my spine looked like it was bent or at least curved, with the L4 appearing to be under a lot of pressure, which was causing the bend. The ‘after’ scan, which for your information was taken on the same day of the procedure, show what appears to be a normal shaped L4, which is just a little bit darker than its friends. The ‘after’ scan also shows what appears to be a straight spine. Middlesborough was right. On the 24 August, she came to visit me in the hospital, as she had done everyday, and I just remember how excited she was when I stood up and she said “Emma, you are standing up straight!”. It turns out, I actually was and I had not been before. The operation was a success.

I like to pay people compliments when they are due, so I informed my Doctor that when on the morning of 24 August, he said the operation would offer instant pain relief, he was right and I thanked him for going ahead with the procedure. I cannot begin to contemplate experiencing the pain I was in a month ago. To say the Doctor looked pleased with himself would be an understatement, but I do not care. Do you know why I do not care? My operation was success. The Doctor said that I can lie down flat if I want to lie down flat. That may be my goal for next week (or the week after) but knowing that it is safe for me to do so, is a tremendous relief.

Now, if only new pains would stop appearing then I would be a happy girl. They are however, and I will deal with them as I deal with everything else. With a smile 😜

I very much wanted to share the scans because they really are that impressive, but alas, I was not at UCH and as I had spoken to my Doctor for all of 5 minutes previously, I was a wuss and failed to ask for a copy. I am sorry. To make up for my cowardice, I have recreated the images for you with my own fair hand. Enjoy.

There are few days when I get to hear that something has been successful, so, let me repeat, my operation was a success. Phew.

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Hip (H)op?

It is now a recognised fact that I will not be doing any break dancing any time soon, which of course, is unfortunate for those of you fortunate enough to have seen me thrust my hips pre-myeloma.

Today though, I may be getting closer… Actually, that is a lie. I don’t know whether the phone call from my clinical nurse is good or bad news yet. All I know, is that I have just been given another thing to contend with.

Last week, you may recall that I had increased pain in my right hip and this was x-rayed. I was told that there were no new lesions and there aren’t, but what I failed to register when I celebrated last week, is that there is a lesion in my right hip. A weakness. A further pain in my arse (nearly).

As I understand it, some medical people discussed my case yesterday and whilst the jury, by jury, I mean, Medically Trained People, is still out, in the next few weeks I will either undergo radiotherapy or have an operation on my hip. Why? I assume to stop the pain and prevent further damage. I am 28 after all and I like my hip. I use it. A lot. And when My Myeloma is gone, I intend on using it a lot more. Nudge, nudge, wink, wink.

Right now though, my head is awash with questions…. Lots of questions. What does radiotherapy involve? Will it reduce my chances of having my own child further? What sort of operation would I need? What are the risks? Will it hurt? Will I have a scar? Will I be able to walk normally afterwards? Would I be able to wave bye bye to my walking stick? Why is my medical team so good?

I am just going to have to wait for my questions to be answered and be patient; this is a bugger. I am no good at being patient and I am going to have to wait a week. A week!? This is indeed a bugger.

Recovery Room And A Pain In My Arse

Before I talk about my recovery, I should probably note that I met two reassuringly professional anaesthetists, who made me think that the procedure would be alright on the night

After what appeared to be a brief sleep, I was woken up in the Recovery Room by a wonderful nurse. All I remember doing is waking up, wiggling my toes and saying “yes! I am not paralysed” and then promptly falling back to sleep.

Sometime later, I was woken up again or I could have woken up myself – it’s a mystery, rather concerned that I needed to speak to my Big Sister in Peterborough. So, the kind lady, called said sister and imagine my delight when I heard the nurse ask “you are in the building?”. It was at this point I exhaled with relief and wondered why I had expected anything less from those relatives of mine. I managed to see her briefly in the lift as I was transferred back to my cell. It was at this point some words came out of my mouth, I could not stop them, it was almost like a tick and it worries me. I am worried about what I am becoming. Bloody cancer. As Big Sister walked out of my eye line, I said “Bye Kirsty, see you in a bit. I Love You”.

True story.

I returned to my semi-comatose state, in the Wing of Broken Dreams and was just delighted, and reassured to see out of the corner of my eye a Twin and a Lali having a discussion with a nurse who was telling them that it was ‘Rest Time’ and they could not see me. I don’t know if they could see the size of my grin, but my gosh did I want to deliver I wide one.

Back to sleep once more, I was indulging in a little time with my EMan and a thumb and woke to to find another Twin watching over me. Man I love these people.

I had more visits today. It would be a fool to bet against Middlesborough attending. I think she is keen for Copella Apple Juice to be the official sponsor of this blog or more generally, myeloma.

In terms of the pain, and reduced pain, time will tell… But I am optimistic.

I also experienced my first catheter today …. It was promptly removed to be certain.

Pictures below of my recovery today and the puncture wounds.

Sleep tight.

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Cement

Trying to recall the fear from this morning is difficult. For a start is was a good 14 plus hours ago and seeing as the secret operation was a success, I feel like there is less for me to complain about it. I would not be me, however, if I did not complain. I am British after all (with a little mix).

So, once the operation was explained to me and I was fortunate enough for a consultant to afford me some time to consult before he operated. Let’s be clear about this though, the consult was not before the theatre had been booked, procedure diarised, I was showered and disinfected and what else, yes, I had been asked to sign a form of consent.

Man, at 08:00hrs this morning, I felt like one lucky girl…. I like to think of the operation as a procedure as it appeared to be minimally invasive. Big Sister had already decided this yesterday after a search on Google yesterday. Google is our real best friend. Anyway, the purpose of the operation was pain relief. The surgeons explained it to me as follows:

1/ I had a fractured vertebra. It was my L4. The fracture was in the middle of the vertebra and there had been some collapse, which was creating increased pressure and obviously pain. There was also an outside chance of further, more permanent damage.

2/ So, after consultation with my medical team at UCL the talented doctors here, because of my age and good health, had decided to operate. It is unfortunate that these Doctors are surrounded by inept night nurses (I had another 90 minute wait for my emergency pain relief this evening) and communication errors or as I rather angrily and inarticulately referred to it this morning as ‘the worst patient care I have ever experienced’. I really have not experienced a lot.

3/ The operation involved placing two biopsy needles in my back, through the fractured vertebra, then inflating a balloon to create a space in the fracture and then filling said space with, what I am sure is, medical cement, whilst all the time, trying not to hit a nerve. Hitting a nerve, I am told, may have resulted in permanent paralysis including bladder and bowel problems. FYI, this would not have helped in my quest to get special cuddles.

I have replicated the procedure in the diagram below.

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So, operate they did. Needless to say, I was petrified and desperately wanted my Big Sister with me.

Scary Scary Shit Balls

Consent given. Risks understood.

Fingers crossed for a routine operation, with no paralysis. Happy thoughts people. Happy thoughts.

I just want to be on the 7th floor with a stinking hangover. Right now.

Nil By Mouth

This hospital keeps getting better and better. At 05:00hrs I was awoken to be informed that I was having an operation first thing in the morning and I was not allowed to eat or drink anything. By the time I had asked what the operation was for, the nurses had left my cell. Now then, I was woken up 15 minutes ago to be informed that I had to prepare myself for surgery as i was the first one up on the board. I have been given a gown, soap, stockings, what appear to be paper knickers and a towel and I have been told to shower. I asked again what my operation is for, they told me the name, a kyphoplasty, but the nurses know nothing else and tell me I have to wait and see the doctor. I explain that I have been waiting since I arrived to speak to a doctor about treatment. As far as I am aware, I am here for a consultation. Not an operation in an hour that nobody has explained. Wikipedia better be right about this. Now they are telling me that in an hour I will be under general aesthetic and I am likely to be in recovery for ‘several’ hours. So then… In short, shit scared.

I will check back later.

Backtracking….

… Just thought. Better be careful with the nurses in case I need a suppository. I would not have needed that… they just had to give me my medication in time!

I swear they are just trying to get me on a commode. Sure, I understand the purpose of them, I just don’t see why they have to be positioned so close to your pillows… Or why somebody else’s commode has to be positioned so close to my pillows.

Still Waiting…

So basically, the NHS has moved me from the Penthouse with 5 star service to a place where the nurses didn’t soften when I started to cry or say ‘fucking’. They didn’t go for my sob story either. Hearts of stone. Sure, they had a tough act to follow after T13’s Angels, but, please… They say there is nothing they can do to speed the surgeon along. I asked if I could see the on call doctor instead, at least for my meds, they said no. Just to recap, I have been here three and a half hours.

If I do not get medication in two hours time, I will not be able to sit up. I certainly will not be able to sleep.

Oh and your curtains are complete shit. How dare you ask me to subject EMan to this sort of bad taste.

Take me back to UCH please.

The Fun Never Stops

Well then… It would be fair to say that I am furious. My head is hot and my eyes are evil. Having prepared myself for a discharge home today, I was informed early in the morning that I may be transferred to another hospital for a consultation on my back. This was confirmed at 13:30hrs. At 18:30hrs I was transferred from UCH to the National Hospital for Neurology and Neurosurgery in a very bumpy ambulance. The perfect transportation for any modern gal with a fractured vertebra. Upon arrival, I asked for some pain relief. I am not allowed any meds until I have seen the doctor. I have not seen the doctor yet. It is 21:00hrs.

I do not like this hospital.

I do not know why I am here. Is it for pain relief? Do I need an operation? What colour socks is my doctor wearing? Why can’t I go home and get my head around my diagnosis before I start my treatment? Why has a doctor not told me? What is a doctor? Why am I drinking lukewarm tap water? When am I going to get my drugs? Why did a man with a nappy rash just walk by my bed in his boxers? Why? Why? Why?

All I know is that they are not concerned about an imminent collapse of the bone. I guess that is a good thing.

In other news, Mamma and Middlesborough were good eggs in the ambulance.

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