I’m Tracey, I am 52 years old, I live in Ipswich and this is my story .. this is just the tip of the iceberg of what I’ve (we’ve) been through, and what it’s like living with cancer now.

HAVE YOU HEARD OF MYELOMA? DO YOU KNOW WHAT MYELOMA IS?

• Myeloma is a blood cancer arising from plasma cells originating in the bone marrow and is a relatively rare cancer
• Myeloma accounts for fifteen per cent of blood cancers and two per cent of all cancers.
• Each year approximately 5,700 people are diagnosed with myeloma in the UK.
• There are approximately 17,600 people living with myeloma in the UK at any one time.
• Myeloma is often difficult to diagnose as many of its symptoms can be put down to other things, not many people have heard of it, or know its symptoms, but a blood test is one of the few tests needed to diagnose myeloma.
• Myeloma (also known as Multiple Myeloma as it can affect multiple places in the body) currently has no cure, but is treatable with chemotherapy and stem cell transplant, however it is a remitting relapsing disease.
• Myeloma has three stages, with stage 3 being the most advanced stage.
• If left untreated, excess amounts of myeloma protein can cause kidney damage, or even renal failure.
• There are different types of myeloma which can influence how the disease will affect someone.
• Myeloma most commonly affects those over 65.

The most common symptoms of Myeloma

• Fatigue
• Recurring Infections (especially coughs/colds and urinary tract Infections)
• Pain (especially back or rib pain)
• Easily broken bones

PRE-DIAGNOSIS

My story began in March 2018 (or so I thought) when I started suffering with tingling in my hands which moved up towards my elbows. I was finding it very hard to sleep and because I had a desk job I was finding it difficult to type and concentrate too. I also had pain in my back, neck, and shoulders. I’m not a person to bother anyone so I didn’t seek help from my GP until the July when it was becoming too much to bear.

The initial diagnosis was perhaps I had carpel tunnel. That started the ball rolling, and I was put on amitriptyline to help me with the pain and to sleep while tests were being organised.

I had nerve conduction studies in the September, followed by my consultation for the carpal tunnel and then had surgeries in mid-October where we discussed the pain in my arm and shoulder, and it was agreed that we’d address that once the surgeries were out of the way (by then my left arm had stopped working, I couldn’t lift it and I was in constant pain). They suspected a frozen shoulder, and I was signed off work.

In mid November, I had the first of the two scheduled carpal tunnel surgeries, and the very next day I was sick all day and in a terrible state .. things really did deteriorate from here.

When I went back for the second surgery two weeks later, I mentioned how ill I had been but I was dismissed as I’d only had a local anaesthetic. I’d seen a few GPs since my initial visit in July, but finally in mid-December, I returned to my GP surgery and saw a wonderful young GP who felt my tummy and told me to go for a blood test. That was on a Friday but as I felt so ill, I couldn’t face the long wait ahead at the Phlebotomy Clinic, so I went home. I had the bloods taken on the Monday morning, waiting over an hour whilst feeling nauseas etc., then it was straight back home to sleep.

That night at around 23:30 the out of hours GP left a message on my voicemail to call them. Seeing as I wasn’t sleeping, I called them back and finally spoke to the doctor at roughly 02:00 who told me to go to A&E. I asked if they meant in the morning and was told ‘no, now’. With my partner, we arrived at A&E in the early hours and I was seen quickly, had lots of tests, given drips etc., and ended up being there all night and admitted to the assessment unit at around 08:00. That’s where my life changed forever.

THE DIAGNOSIS

After lots and lots of questions, I was told later that day that I was in end-stage kidney failure and had less than 24 hours to live!!

The following day, on the Wednesday, 19th December 2018, I received my diagnosis, finding out that  my problems were caused by an undiagnosed cancer called myeloma, which I’d never heard of. I asked if I needed a biopsy to confirm it, but being a blood cancer, the blood test was enough for diagnosis (if only I’d have had one earlier)! For some reason I wasn’t shocked, we have a long history of cancer within my family. I was so ill I knew I just had to get on with it and get well.

I had a neckline put in later that day ready for the dialysis, and I had a bone marrow aspiration carried out for the myeloma assessment. I started kidney dialysis on the Thursday and started treatment for the cancer on the Friday. I was in hospital for a month, over Christmas and New Year.

I then found out that the issue with my arm was a severe lytic lesion, again caused by the cancer, but they couldn’t insert a humeral pin at that time due to the levels of cancer in my blood, so I was advised to be careful not to break it, and I didn’t until April 2019. At that time, I was able to have the humeral Pin operation which changed my life as I had use of both of my arms again.

THE TREATMENT

I had seven months of treatment for the cancer which wasn’t easy. My first line of treatment consisted of lots of tablets, transfusions, and infusions, and included radiotherapy for my arm.

Then there was the kidney dialysis, three days a week for four hours each time, and lots more besides including physiotherapy on my arm and hands, side effects etc.. It was a really difficult time!

In July 2019 I had a stem cell transplant and before I left hospital after a couple of weeks isolation my kidneys had recovered enough to stop dialysis too (I was very lucky but still live with chronic kidney disease.

RELAPSE

I achieved stem cell transplant results in the top 5%, but my cancer numbers started to rise immediately, and I’d officially relapsed within six months, starting second line treatment a year and a few days after my first stem cell birthday in July 2020. I found this harder to deal with than my initial diagnosis as I was feeling well and enjoyed being almost treatment free for a year. I was only on second line treatment for a couple of months as I ended up in hospital with issues caused by the myeloma.

I moved to third line treatment in September 2020. Thankfully this reduced my numbers again and with the help of a maintenance drug, I have been stable with my bloods in the normal range for over two years now. Myeloma is a remitting relapsing disease but hopefully it will stay sleeping for a while longer.

IF ONLY I’D HAVE KNOWN – EARLY DIAGNOSIS 

Looking back and understanding the signs and symptoms of Myeloma, I realise that I had been ill for a long time. I had been suffering from fatigue and having to stop running and exercising back in 2016, with more colds, which hung around for longer. The importance of early diagnosis is huge, and if I’d have gone to the GP earlier, things wouldn’t have been as acute at diagnosis.

If you have symptoms persisting for more than three weeks, please get them checked out.

FEELING GRATEFUL

There’s a saying ‘it takes a village’, and it does! I couldn’t have got through any of this without the fantastic team at Ipswich hospital, my partner who has lived every step with me, my family, and my friends. I’ve also received support from charities such as Cancer Campaign in Suffolk which has been invaluable.

Cancer Campaign in Suffolk would like to thank Tracey for allowing us to tell her story – you can continue to follow Tracey’s myeloma story on her Instagram account here https://www.instagram.com/traceybantoft/