Category Archives: Kyphoplasty

My Mouthful 

The way I envisaged my Graft Versus Host Disease to materialise is, surprise, surprise, not the way it has actually presented itself. I imagined and hoped for weight loss inducing bowel movements and feared organ failure. Not once in all the scenarios I fretted over for I don’t know how many months, did I consider the possibility that my mouth would be the unlucky cavity awarded the honour of being infected (if that is the correct terminology) with GVHD. Not once. Nor did I realise when the first ulcer appeared, just how annoying having a painful mouth can become.

Do you know what I have learnt since my mouth turned beige? Throughout the course of a day, I use my mouth a lot. A hell of a lot. 

My cheeks are swollen, my tongue is raw and my breath is lethal. Food collects in significant lumps in the corner of my mouth, requiring a rinse or five every time I eat. Gone is my ability to swallow 10 pills in one go and going is my ability to have a gulp of water without getting half of it down my top. In, is a gentle dribble from the right hand side of my mouth and cracked lips. Delicate flavours are currently lost on me and my beloved  English Breakfast Tea now tastes like soil. I am told by the Medically Trained People that this is all very common, as is an inability to take anything hot and an extreme, almost comical aversion to chilli. 

To top all of that off, it is just plain old ugly. 

   
 
It has been over four weeks since my mouth was inspected by somebody other than myself, and I have been put on a frice daily cocktail of three mouthwashes. Yes, three mouth washes, each to be done four times a day. Even for somebody who spends as much time indoors as I, this is a difficult regimen to adhere to. The mouthwashes forming the triple cocktail are called Doxycycline (an antibiotic) Betamethasone (a steroid) and Nystan (a milky substance that tastes like a hangover). They are absolutely revolting. They taint everything. One day, I had to gobble a packet of Crispy Bacon Wheat Crunches as a palate cleanser. I suspect there are healthier options. 
For the first two weeks, I meticulously did each mouth wash making sure I swirled the Doxycycline and Betamethasone for two to three minutes each. Over the course of the day the whole thing took just under an hour. An hour! Who has an hour for oral hygiene? At my follow up  clinic appointment 18 days after I was prescribed the drugs, I was informed that it was called a ‘triple cocktail’ for a reason, meaning the drugs could be mixed together. Brilliant. A great time saver, but one that tastes rancid. Not only do they taste like something one might bring up on a morning after the night before, they also look like it. 

 Appetising 

As is clearly evident, I complain about my mouth all day every day. My intellect has led me to believe that this is because I use my mouth all day every day. It is also something new. I have experienced many a horrible thing on My Myeloma journey, but this GVHD malarkey that has manifested itself in what is essentially oral thrush, is the most irritating. It’s not a broken bone, it has not caused severe mobility issues, it’s not fatigue and it is not an incurable cancer. It’s trivial.

I know it is not actually trivial. The mechanism of GVHD with its very fine line between good and evil is a science that goes far above my head. It is also a lottery, and so far, it looks like I got the bonus ball. I wanted this necessary evil, I guess, just like everything else it is going to take some adjustment. 

👅👅👅

EJB x

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A Very Pleasant Lady

I received two letters this morning from doctors to my GP, both of which refer to me as a ‘very pleasant young lady’. I have had this before.

If My Myeloma were a popularity contest, I would appear to be winning.

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Dead Brave

I was dead brave when these little fellas were removed earlier… I laugh in the face of pain. Ha ha ha, pain. Ha. Just ask Morris. I think she was impressed too.

Oh, and in case I allowed you to forget, I had back surgery last Friday.

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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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