The Roller Coaster ride of Myeloma

When I don’t really fully understand things happening in my life I tend to look around for a metaphor for my little brain to take it all onboard. Yesterday had started so well but then I was plunged into a world of darkness that had me searching for answers.

I started the day off in a buoyant mood, arriving at the UCLH Cancer Centre before the security guards had left and the day staff had arrived. Colin and I walked round the corner and enjoyed a leisurely Starbucks breakfast. I can thoroughly recommend their porridge.

I was first in line for my blood, in and out first time with hardly a moment to notice the small scratch. The blood is quickly sent off to be tested before the results can determine the amount of drug that needs preparing for the Wednesday and Thursday’s regime.

Colin and I then sat around in reception, him working on the laptop and me catching up on all the latest gossip in the glossy magazine.

At 10.30 we made our way up to the Parallel Universe (floor 2 to everyone else),even though my actual appointment wasn’t until 1pm. This is where I have my cannula inserted and we wait patiently for my chemo drug to be ready.

There is one particular nurse who usually gets the cannula in first time. This is not an easy process as my veins are small and well hidden, so it usually requires sticking my arm into hot water. The Super Cannula wielding nurse was busy seeing to another patient, so I had another lovely nurse, but prepared myself, for perhaps a third time lucky scenario, which is often the case if super nurse is away or busy? I needn’t have feared, the hot water and the excellent skills of this new nurse ensured we were in first time. Whoppee, this was a really good start to my Wednesday.

The day got even better as I managed to catch the eye of the tea lady and order myself a free lunch. Better than that, I was hardly out of my cannula bay when a nurse from the other side of the room called me over to start hydrating my body. This is done by IV and is necessary before I can have the toxic chemo entering my blood stream. The nurse hoped that by the time my body was well and truly hydrated the drug would have arrived from pharmacy. Now most people say that I am a pretty optimistic person, my cup is usually well than half full, but with my experience of waiting for my drug to be prepared I doubted the hopeful wishes of my nurse. Still I was in the right chair now and could get on with some work on my iPad.

Well you could knock me over with a feather. I had hardly started my lunch when the tell tale yellow bag arrived and inside it was my very precious brand of poison. By 1.30pm I was up and out of that chair, as quick as lightening and heading for home. No fighting with the rush hour and time and to spare to pick up the evenings supper lovingly made by my parents, and a quick visit to my lovely grandson, with the excuse of helping Jem with her computer problem.

We were back home by 4pm in a jolly good mood, but having Myeloma as anyone who experiences it knows, nothing can be taken for granted. The post bought with it a copy of the monthly summary letter that gets sent to my GP. Here it informs the doctor of the previous months blood tests, results from any other test carried out, the present situation and the plan of action. So it was not really new news. My consultant always very kindly and gently explains what is going on in a way that he feels appropriate and enough to take in during my monthly clinical appointment. However, the letter puts it in a much more formal ‘doctors language’ which often doesn’t make easy reading.

I read through the letter carefully, compared the results from the previous month and then usually file it away with all the rest. However when there is something new written, words I don’t understand, I end up trying to look them up on the good old internet. Knowledge is power isn’t it? I am always careful to look out for what appears to be the most professionally of sites. I didn’t like what I read, and my mood plummeted and the tears started to fall. Colin hugged me as together once again we tried to make sense of it all. Colin’s stress causes him to literally reach and vomit as his body tends to react physically to anxiety. I tried calling Myeloma research for information and support, but they were on staff training. Eventually I did get hold of a lovely nurse on the Macmillian helpline. (I’m not sure what I would do without the amazing support from this service) Macmillan is open to friends and relatives too is if you ever feel like a bit of extra support yourself just give them a call or email them. They even have a chat group for carers. The nurse, on the line, couldn’t have more caring and compassionate whilst remaining very factual as she explained every part of the letter I read out. By the end of the call I felt more reassured and able to get on with the evening, including my mammoth Wednesday night drug taking regime, consisting of 46 tablets in all.

This morning I started thinking of a metaphor, to explain my Myeloma journey,and for me being at a Theme park works pretty well, especially as I am not a big fan of these unless there is a game of ‘Pluck a Duck’going which I doubt there is at Thorpe Park. The park is unfamiliar territory, but from reading the blurb I can tell its one place I would rather not go! I however, in my world of fantasy and nightmares have found myself locked in by closely guarded gates. The roller coasters representing my Myeloma ride’s. They are scary and definitely something I would never choose to step onto even before it starts moving, but I am forced onboard to face my worst fears?

The rides at the Thorpe park describe a whole host of thrills and spills, tucks and turns.
Take for example the extreme terror of the Saw (their words not mine!).

“Now more terrifying than ever, you won’t know what lurks around the corner as you enter Jigsaw’s blood-curdling twisted world in the dead of night! You’ll be fired through a gauntlet of twisted metal then dragged up 100ft before being dropped through sharp rotating blades. Will you survive?”

Do people actually do that for fun?

Or you could try the Mighty Samurail

“Only the bravest of thrill seekers will conquer the challenge Say your prayers as you spin relentlessly through 360 degrees of stomach-churning terror, in one of the most extreme thrill rides the UK has to offer! This ride will show no mercy as Samurai slices and dices through the air reaching brutal forces of up to 5G’s! Be dragged backwards into a blind 127ft drop before hurtling through the wasted landscape in a series of gut-wrenching near misses, including, new for 2013, the mangled metal of a devastated billboard.”

Can you see the similarity?

Yes for some the rollar coaster comes to a sudden end, and you may get to climb off and not be called back on board for months or possibly years. (5 months in my case), But you never actually leave the park. Meanwhile you wander around grabbing hold of any exciting but much less dramatic amusements on offer. You can eat and drink, have fun, laugh and cry, you may even being to work whilst in your park but you ain’t leaving it. It dictates your life from here on in. You become acutely aware of your body, for every sign and signal that will have you rushing to the First Aid tent, or in my case Accident and Emergency department.

My letter formally stated in medical terms the findings from the MRI scans and clinical examinations. It described a large number of ‘red flags’ warning signs that MUST not be ignored. The gist of it being, the bones in my spine (T12 to be exact) have come in for some pretty serious hammering from the myeloma. A mass has also formed around it. This puts my spinal cord at a pretty significant risk of developing Cauda equina and conus medullaris syndrome. In lay terms this is a bunch of nerve cells popping out between the vertebrae with the risk of permanent irreversible damage. Hence the reason for the ‘finger up bottom’ test. The good thing is at least everyone is aware of this and we will take precautions to avoid it happening and the chemo should help. So it’s not all bad, and like I and the Macmillan nurse said “knowledge is power”.

When writing these posts it really is difficult to know what to include. The last thing I wish to do is give my family and friends more to worry about, but at the start of the Blog writing process,I promised my honesty. Also lots of people reading this are on their own myeloma journey and may find this sort of information useful, although myeloma is such an individual disease. Anyway I do apologise for any difficulties this may have caused you and Thank You from the bottom of my heart for your continuous support.

Looking on the bright side I am on the whole feeling physically and mentally very well and particularly enjoying our various projects that we have on the go. I have not even had any real succumbing to do as yet!

Today Kate will kindly take me up to the hospital and I hope for an even smoother experience, as I have still got yesterday’s cannula already in place.

Keep up your own energy levels and positive mental health state, I hope I can act as a good example as to how this works for me.

Thank you for listening.

Deborah xxx

Filed under: Myeloma, NHS