First, a bit of history…

Summer 2010
I experienced a lot of upper/middle backache which seemed to move around. As soon as one ache disappeared, another appeared elsewhere. At the same time, my appetite was decreasing more and more and I am someone who really likes her food. Things started not to taste right, so I didn’t want to eat. I didn’t have the energy to cook and most evenings after work, I wouldn’t have the energy to do anything other than watch TV till about 9pm and go to bed.

During the summer, my mum was ill and I spent a lot of weekends driving up and down to Liverpool to see her. I found these trips absolutely exhausting.

25 Dec 2010
I got ill on Xmas Day and over the long weekend: temperature, feeling weak, very tired, no appetite. I thought it was the virus everyone seemed to have. I saw my doctor on the Wednesday, who also thought it was a virus, but decided to do various blood tests anyway to be sure.

When I went back, she said my blood results showed I have severe kidney impairment. I was in complete shock. She gave me antibiotics for a kidney infection, which had showed up in the urine sample and referred me immediately to a renal consultant, who I saw the following week.

I had to have an ultrasound, which showed all clear apart from my scarred kidneys from early childhood, which have been working fine all my adult life.
I had to have weekly blood tests, which was very hard as my veins don’t play the game and they often have to try a few times.

The consultant didn’t say/do much on the first visit because he had to wait for a series of blood results before he could make a more specific diagnosis and decide what/how to treat. The illness was identified as chronic kidney disease (CKD), which takes time to see the whole pattern.

Kidney failure goes up in 5 stages, based on the levels of creatinine and urea in the blood, i.e. the amount that the kidneys are not able to eliminate. It’s not taken on the basis of one test, but over a period, therefore the name CHRONIC kidney disease. Stage 5 is also called end stage kidney failure and includes possible dialysis and/or transplant. My first 4 tests put me in Stage 4. The next one worryingly went into stage 5, which was very scary and shocking.

However, there was also some confusion about my symptoms, which didn’t quite fit with CKD:
• fatigue, weakness, dizziness
• exhausted and sometimes breathless from the least exertions
• nauseous feelings without being sick, painfully trapped wind and inability to burp, which gets worse later in the day
• almost complete loss of appetite and even when I did eat, food tasted wrong
• I had not eaten a full meal since before xmas, and I lost about 14kg/30lb
• nightly insomnia between 1 and 4am
• totally emotional and weepy at the drop of a very small hat
• middle backache around my ribs like a vice, especially later in the day

31 Jan 2011
Another blood test. This one checked some things which had not been checked before…

1 Feb 2011
My second appointment with the consultant, Dr Matt Hall. He had discovered in the most recent blood test, my calcium levels were excessively and dangerously high (hypercalcaemia), so he wanted me to come into hospital that same day for treatment, which had to be administered by IV. The hypercalcaemia explained my appetite and nausea issues, but the next question was why is my calcium level so high?

1-4 Feb 2011
They gave me several litres of saline IV drip to get me rehydrated over 2-3 days. I had major trauma when they were trying to get a cannula into my hand, causing a lot of pain, tears, fear and bruising.

I had to have a CT scan, preceded by having to drink 800ml of a barium drink over 40 mins, which is truly disgusting! Fortunately, a friend came to visit and support. The scan itself was quick and painless.

After 5 litres of fluids, they put me on the IV drug to lower the calcium level, to which I responded well.

However… there remained the question of how/why my calcium levels got so high. Enter CT scan results, showing lesions in my bones, through which the calcium has been leaking into my body. This led them to need to do a bone marrow biopsy to check for myeloma, which is a cancer of the bone marrow.

Fri 4 Feb 2011
They did the biopsy quickly and without much discomfort on my bed, with the promise of an initial result with luck later that day. As promised, they came back to see me within 2 hours. A small contingent, who invited me into a private room to explain. They told me that the result showed it is myeloma and that it is treatable, but not curable.

The discussion with doctors about the CT scan and biopsy, having the biopsy itself, receiving the diagnosis and then being given the first part of the treatment – steroids which made me totally hyper… all this took place on the same day – a completely overwhelming day! I didn’t have time to even think about what it all meant, like my life had been picked up and thrown down very badly in an instant.

And here my story begins… I have multiple myeloma and I’m learning to deal with it.

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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5 Responses to First, a bit of history…

  1. Maureen Mooney says:

    So much has happened so quickly for you Jet. It all must have been really frightening. I’m hoping and praying (to the Universe) that you go from strength to strength.
    I think the blog will give you the opportunity to gain more power and control over it by exploring it all (rather than burying it or pushing it aside.)
    Will be thinking of you and sending you the premium stuff while I’m away. Mo oxo

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  2. Megan Williams says:

    Oh Jet, how awful for you! You couldn’t possibly have been able to take all that in.
    I’m not a religous person so I can’t pray for you but I do believe in the power of intention and I intend to send some good positive thoughts into the ether.
    It’s going to take ages for you to assimilate all that has and will happen.
    The only advice I can give is that if a question occurs to you, write it down so that you can ask for the answer when you get the chance. I didn’t do this for the first couple of years, prefering not to know.
    I’ve since realised that knowledge gives me the power to plan the rest of my life (well, kind of!)
    Anyway, big love. xxxx The blog is a brilliant idea. : )

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  3. I’ve only just read this, Jet.
    So… a 49 year old shows up with severe kidney impairment and “middle backache around my ribs like a vice”. Yet… none of the docs – neither GP nor renal consultant – thinks to do SPEP/SFLC as an immediate matter of course. You’d think a kidney specialist, in particular, would think of this!
    I really worry about the diagnosis experience for younger myeloma patients such as thee and me. It’s not good enough – the docs need education.

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  4. Kevin Wright says:

    hi Jet, diagnosed in August 2012 and been through the worst of it (hopefully!) I have discovered (through Alex’s Dial M Blog) some amazing people and other blogs out there. We all appear to have gone through similar feelings and emotions as well a brand of humour and perspective unique to ourselves! We also has to endure a fair bit of incompetence at the hands of the Docs prior to diagnosis. My GP had six months to try to figure it out, I had all the classic signs….but I was off for private Vertaplasty at the hands of his pal! It only the concern of his very junior GPs that alerted me to Myeloma and I was diagnosed in less than 24h. Anyway, onwards and upwards. Best wishes, Kevin.

    Liked by 1 person

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