Me and myeloma: Sarah’s story

Can you tell us about your myeloma diagnosis?

My myeloma ‘journey’ started with lower back pain which would not go away and worsened over the course of 12 months. I also had repeated, severe chest infections and was diagnosed with asthma, even though it eventually turned out that it was myeloma causing my breathlessness and infections.

Before my diagnosis, I also suffered from very bad fatigue, worsening mobility and unexplained weight loss. It took about a year for me to be diagnosed, in spite of repeated visits to GPs, osteopaths and a thoracic consultant – sadly, as a youngish woman with a busy career and social life, a lot of my concerns about my health were either dismissed by medical professionals or attributed to my hectic lifestyle.

I finally got my diagnosis after paying for a private MRI scan of my back, after which the radiographer spotted some lesions on my bones. I shared that MRI report with a GP, who sent me for more blood tests, including one for myeloma.

I had never heard of myeloma before that GP appointment and, naturally, Googled the term when I got home. As soon as I read through the symptoms, I became pretty certain of my diagnosis. It was then confirmed in hospital a few days later.

Whilst it was devastating to discover I had an incurable cancer at the age of 37, there was also an element of relief in finally knowing what was wrong with me and having an immediate treatment plan that would hopefully start to address and improve my symptoms.

In the early days after my diagnosis, I did have some very low points as I came to the realisation that myeloma would impact every aspect of my life as well as those of my boyfriend and family. I had to get my head around the fact that I wouldn’t be able to have a family of my own and that I probably wouldn’t be able to continue with the career that I’d worked so hard for. At the same time, however, I tried not to wallow too long in the negatives, as I felt that I would have better outcomes from my treatment if I maintained a more positive mindset.

What helped you when you were first diagnosed?

I received some useful information about myeloma and blood cancer in general from my CNS when I was first diagnosed – the literature gave me and my family something factual to refer to and helped us to understand red flags, such as a high temperature, and what we needed to do in certain situations.

I’ve always tried to avoid Google and have stuck to the Myeloma UK (and Blood Cancer UK) sites, as the information is so much more reliable, as well as relevant to the treatment protocols in the UK. There is a lot to get your head around in the early days of diagnosis and treatment, so I always took someone with me to my consultant appointment, and made a list of questions for my consultant before the appointment, in an effort to cover all bases.

I spent a lot of time with my family in the weeks after my diagnosis and we were all extremely careful about handwashing and hygiene to protect my fragile immune system (bearing in mind this was early 2019, so a year before Covid struck).

I was worried that life would never return to ‘normal’ and it did take me a while to get up the confidence to go out for an evening with friends; however, I told myself that staying at home all the time was also damaging to my health, and going out for a low-key evening with a few old friends was actually the tonic and confidence boost that I needed.

I think if you take small steps and try to do physically manageable activities that you also feel mentally comfortable with, then you gradually build up your confidence and reclaim some of your old, pre-myeloma lifestyle.

What message or advice would you give to someone who has just been newly diagnosed?

Don’t panic! Hearing that you have myeloma is initially devastating but it is a treatable illness and new treatments are being developed all the time.

At the time of my diagnosis, I had to be admitted to hospital and could no longer walk. 4 years later, life is obviously different from how it used to be, but I am able to walk again, I live independently and still enjoy many of the hobbies and activities that I did before my diagnosis.

Avoid looking up myeloma on Google and referring to sites and/or articles about myeloma from the US and other countries, as the treatment protocols can vary greatly from what is available in the UK; always refer to Myeloma UK in the first instance.

Contact your CNS if you are unsure about anything regarding your diagnosis and treatment – they are usually really approachable and will help to answer any queries or concerns you may have.

I also found a Facebook group for UK patients and carers very helpful and supportive – so many of the (thousands of) members have been through the treatments, side effects and bad days that we all experience, and are always willing to offer their advice and support.

As a young myeloma patient, I also reached out to Shine, a charity that helps cancer patients in their 20s, 30s and 40s. Through them, I’ve met other patients of a similar age who have had a diagnosis of incurable cancer; sometimes it really helps to be in touch with people who are going through something similar to you and just ‘get’ it.

Can you tell us about your experience with remission?

I had about a year’s remission after my stem cell transplant in September 2019.

Although I was very tired for a couple of months after my SCT, I began to start doing ‘normal’ things thereafter, like going to gigs and having weekends away (all of which I discussed with my consultant beforehand, to check that nothing was too ‘risky’).

It was bliss to have a period of time during which I didn’t need to take any medication and had fewer hospital appointments. Sadly, Covid hit about 6 months after my SCT, which put paid to a lot of my plans, e.g. holidays, so I did feel rather cheated!

What message or advice would you give to someone who is in remission?

Enjoy every moment.

We all understand that myeloma is a relapsing-remitting condition, so you need to make the most of the times when your myeloma is in remission and you hopefully feel pretty well in yourself.

Having myeloma has taught me to live in the moment more; now, I try not to dwell on things that maybe haven’t gone so well in the past and which I can’t change, and I try to not look too far ahead either – I just do my best to enjoy and be grateful for each day.

Myeloma has also taught (or perhaps forced!) me to slow down – before my diagnosis, I had a long daily commute to a busy and pressured job in which I worked long hours and often felt obliged to say yes to things. I have overhauled my lifestyle as a result of my diagnosis and now ensure I make time to rest when I need to and I try not to over-commit myself – I don’t feel guilty about saying no to things as I know that I need to prioritise my wellbeing.

Can you tell us about your experience with relapse?

I was bitterly disappointed when I relapsed a year after my SCT, as I had hoped that it would give me several years of remission. My consultant immediately had a plan of action for my next line of treatment, so I at least felt reassured that there was an alternative. Sadly, I did not get on well with the second line of treatment, so my consultant and I agreed that we would move on to a third line.

What helped you when you relapsed?

My consultant has been very supportive and empathetic when I have relapsed and has taken the time to explain the various options to me. I have really appreciated that support, as well as the openness and realism about future lines of treatment and how I might tolerate them. I have tried to maintain my positive mindset when I have relapsed and to be pragmatic about starting a new line of treatment.

What message or advice would you give to someone who has relapsed?

Allow yourself to feel sad that you have relapsed and acknowledge the disappointment and emotion that comes with finding out.

That said, try not to dwell on it for long, as there are other treatment options available and you need to steel yourself for the next one. Talk through all the next treatment options with your consultant and make sure that you are comfortable with what is being proposed – you could always reach out to other myeloma patients to ask them about their experiences of the proposed new line of treatment, as well as seek advice from Myeloma UK.