MYELOMA – MY STORY
By Joanne Earley (Care Assistant, Salisbury)
Joanne Earley joined Abicare in January 2019 with no professional
care experience. She passed our training with flying colours and from day one
has shown a real passion and dedication for the work we do. Joanne is a
treasured member of the Salisbury team and has been praised by the management
there for "Always going the extra mile, going above and beyond to help her
team and her hard-working attitude." Although Joanne had no professional
experience when she joined Abicare, she has a vast knowledge of what it takes
to be a carer. Here, in light of National Myeloma Week 2019, Joanne wanted to
share her story, in her own words…
"Just before Christmas 2017, my mum thought she had flu
coming. She ached, especially around her rib cage and her arms. She has
fibromyalgia, so when the cold/flu symptoms went away, and the aches and pains
didn’t she blamed that. She was getting breathless – she might be anaemic, the
cold might not have gone properly – she wasn’t going to bother the doctor, they
weren’t going to be interested, they were just going to tell her she needed to
lose weight. She was still walking several miles a day, gardening, shopping and looking after the grandchildren.
It got to the stage where the pain was keeping her awake at night-
she was losing strength in her arms, and her chest and back were starting to
really hurt. This was within a month of what we thought was flu. Finally, we
managed to persuade her to make a doctor’s appointment. She wouldn’t make an emergency
one, she waited 10 days for the first available non- urgent appointment. She
was in pain every time she moved and wasn't sleeping. The doctor told her to
take paracetamol and keep moving.
The following week she rang the surgery again and asked to speak
to the duty doctor. The doctor listened to what she had to say and asked her to
come in the following day for blood tests and to bring a urine sample in. It
might be polymyalgia. I got sent to the surgery to pick up the sample kit- at
the time it was just relief that they were doing something. My sister took her
in the following day for her blood test, I rang her later that day and she was
joking about how much blood they had taken. She messaged me later to tell me
the doctor was referring her to haematology as there was protein in her urine
sample.
After a fortnight we still hadn’t had the referral through – The day
after Mother’s Day 2018, mum said she would ring the doctors, and I went to work
for the afternoon and evening shift. My sister-in-law rang at about 3pm to tell
me my brother had taken mum to A&E as the pain in her chest was getting
worse. A long afternoon followed that call. I got home just before 9pm and mum
texted me to ask if I was home, it was snowing so I thought she was just worrying
about that. What followed next was that mum had been diagnosed with multiple
myeloma – she was to go back to haematology the following morning.
On the day I messaged my mum, my brother, my sister – no one
answered, their phones rang until the answering service picked up. In desperation
I rang my sister-in-law, who told me that my mum had called my brother just
before 6am. She had bumped into a door frame and felt the bone in her arm
shatter, so they were still at the hospital. They x-rayed her and found that
the cancer was destroying bones in her arms, hips, back and ribs from the inside
out. Mum was in hospital until halfway through June, during that time she broke
her other arm sitting up in bed and they replaced both her hips.
They ran countless blood tests, did ECG tests and they scanned
her kidneys and her brain. They were going to use radiotherapy on the sites in
her ribs and back – she wasn’t allowed out of bed until they had replaced both
her hips in case the other broke. The day they discharged her she had to come
home in hospital transport as she couldn’t sit in a normal car.
We had to rearrange the house before she could come home - bed
in the living room, furniture moved, a spare room full of furniture, books
ornaments and rugs. Mediquip deliveries 2/3 days straight while rails were put
up and specialist furniture and mobility aids went in. She hated it. Still, it
wasn’t going to be for long, just until her hips healed properly.
They started the radiotherapy at the end of June, which made her
ill. Mum's hips still weren’t recovering properly as chemotherapy and
radiotherapy slow down the healing process. Once the radiotherapy was finished,
they decided she was a good candidate for an autologous stem cell transplant.
This means using your own cells to produce the transplant cells. It has a lower
risk of side effects and rejection. However, it meant a course of pills and daily
injections to stimulate bone marrow growth which made her bones ache and
reduced her mobility even more because she couldn’t work around the additional
pain.
They put a Hickman line into her chest to use to draw off cells.
This meant another 3 days in hospital then a fortnight of anti-viral medication
and antibiotics.
The
next step was an extremely powerful course of chemotherapy before they
transplanted back into her the cells they had previously taken from her. This
time when I went to collect her it was a massive shock as she had aged 10 years
in 5 days and all her hair had fallen out.
The myeloma hadn’t finished with us
even at this stage. Mum was really ill with vomiting and diarrhoea for about 6
weeks – we were going really careful with her food and drink as she had no immune
system to speak of at this stage. She was losing weight rapidly and was in many
ways more poorly than she had been before, which was upsetting, to say the
least. Her kidney function started dropping badly at this point too, so it
resulted in yet another hospital admission. Kidney failure can be symptomatic
of myeloma itself, so we were back to wondering if the treatment until this
stage had failed.
However, on one particular day, one of the nurses observed that mum’s
symptoms were worse after she had eaten dairy products. My mum grew up on a
dairy farm and has never had a problem with milk-based products in her life.
After a somewhat rushed consultation with various doctors and specialists, it
was discovered that mum was now lactose intolerant. - This was almost certainly
down to the stem cell transplant.
I have been my mother’s carer since she was discharged from this
spell of being in hospital. I do her shopping and her housework, I take her to
medical appointments and deal with her prescriptions. I worry constantly about
her getting infections as she still has no real immune system – she will need
to have all her vaccinations again from about August this year (not helped by
the fact that due to one of the medications I take I’m immuno-compromised and
therefore catch all sorts which I need to avoid sharing with her.) She has to
take antibiotics for the rest of her life, and it has left her disabled.
The worst part is that although she has been through all this, the best result they can possibly hope for is that it stays in remission and there
are no guarantees that it will, so I’m also constantly looking for symptoms of
the myeloma coming back as she has a particularly aggressive type.
Myeloma is not a one size fits all diagnosis- My mothers was in her bones, but it can damage
people’s hearts, kidneys and brains. At the moment all
they can do is treat it, they can’t ever get rid of it completely; on a
personal basis it is devastating especially as we have already lost my father
to cancer.
Incidentally, neither of my parents smoked, they weren’t big
drinkers and both had physically active jobs and lifestyles."
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