I was a 53-year-old vegetarian, fit and healthy. I have been a runner for 30 years. I did yoga and weight training, and even had some abs toning! I drank moderately. I ate pumpkin seeds and kale. I mixed the juices. I smugly read all about healthy longevity. I must be irresistible. No wonder fate decided to intervene.
Last August, I hit my forehead against a beam so gently that my head barely registered, but when my body flinched, the pain radiated so violently down my back that I collapsed, breathless. It eased, but it happened again the next day, this time while wearing socks. The doctor took into account the disc problem and prescribed codeine and diazepam. A week later, as I was unloading the dishwasher, a loud crack was heard and I slid to the floor in pain. I was howling and couldn’t move. I had to shout upstairs for my 18 year old daughter who was wearing headphones because my phone couldn’t reach me. Paramedics carried me four hours later, giving me only gas and air so I could bear the pain.
The Emergency Department ward was packed; There were people on trams everywhere. While my husband was away for work, my daughter and 21-year-old son eventually found me hooked up to a morphine drip, happily hallucinating a cartoonish village on a blank wall. The harassed doctor said my x-ray was clear, with obvious signs of osteoporosis. My son drove me home the next day. Every speed bump was torture. A month-long period of inactivity has passed. It took me half an hour to get from lying down to an upright position with the support of two people.
At least I went to a private MR with free parking and no cars. The spine consultant said it could even just be muscle damage; After all the fuss, that would be great, albeit a shame. Days later, the same surgeon, no longer as relaxed as before, sat me down and said: “Have you lost weight lately?”
Ah. The question that means you have cancer. Come to think of it, I’m cheered to see that I’ve been at the bottom of my usual range lately. Oh dear. A cold panic spread through me.
The MRI revealed two fractures in my spine that were missed by the busy emergency room. The surgeon paused. “And there’s something about the hips. Lesions. Maybe myeloma.”
The musculoskeletal surgeon sent me for a series of blood tests.
My husband then quipped, “You won’t get cancer.” Frankly, it didn’t seem likely. Google found that the most common myeloma patients are people over 70, male, non-white, and with a history of working with industrial chemicals. Not really me.
But after a few days, my doctor called three times a day. When I felt bad, I called him back. “You have myeloma, I’m very surprised,” he said on the phone.
What is myeloma?
I had almost never heard of myeloma. After some scary Googling, I decided to just listen to what medical professionals told me. Myeloma is rare, accounting for only 2 percent of all cancers. Around 24,000 people in the UK are living with the disease, and only a quarter of them are under 65. This is a blood cancer that arises from plasma cells, a type of white blood cells produced in the bone marrow. Normal plasma cells produce antibodies that fight infections, but in myeloma, plasma cells proliferate and produce a single type of antibody called a paraprotein, which has no useful function but instead harms the body.
Immunity decreases as paraproteins invade the bone marrow. Like many undiagnosed myeloma patients, I was notorious for catching every virus. They damage bones wherever the bone marrow is active (spine, skull, pelvis, rib cage, long bones in the arms and legs). Many people, like me, find out they have myeloma after breaking bones for no apparent reason. Looking back on the last few years, I chalked up random aches and fatigue to menopause. I warned people that after 50 running speed falls off a cliff. Turns out it wasn’t like that, it was just me, my pelvis full of holes. Damaged bones release excess calcium into the bloodstream, which damages the kidneys.
You’re not very inclined to die related to myeloma, but the problems it causes with myeloma and its treatment – such as kidney failure or pneumonia, after several years as the body weakens over time. Myeloma cannot be cured, but it can be treated. Someone my age has a 50 percent chance of living 10 years, but some live 20 years or more.
Treatment
Because I am relatively young, I can tolerate the toughest treatment, which gives me a longer chance of recovery: I have gone through four cycles (16 weeks) of the first chemotherapy regimen and now I am taking a short break to recover. I’ll soon be moving on to the next stage, an autologous stem cell transplant – where they’ll harvest my healthy stem cells, freeze them, and then blast me with even stronger chemotherapy (“a rough ride” in consultant parlance).
I’m going to lose my hair at this point: This chemotherapy also causes sickness, diarrhea, and mouth sores, sometimes alleviated by sucking on ice for hours. Since my immunity will be zero, I will be in the hospital and will be monitored closely. Any signs of infection need to be treated immediately to prevent sepsis. After this chemotherapy, healthy stem cells are reintroduced and I have to stay in the hospital until my white blood count returns to a safe level. When I’m allowed back home, I’ll need to freshly wash bed linens, towels, and clothes every day, and I won’t even have to be near the dog. After that HEI still have eight weeks until my first chemo. Recovery takes months.
Dental work and monthly bone infusions
Many myeloma patients need a dental exam before treatment because of the risk of oral infection. I had 10 hours at the dentist to redo the failed root canals. Then, getting out of bed one morning, I broke another vertebra and was hospitalized for another week. My bones are in ruins. Three acute fractures are just for starters, the rest are full of cracks and I will need monthly bone infusions for three years. The consultant playfully advised me not to fall until the veins began to fill the gaps. Meanwhile, my body seems to be taking its own precautions. I stopped sneezing completely. I haven’t even had that desire, not once since last August. That was my body’s wisdom, since people can break bones by sneezing due to myeloma, but how did it know that?
Chemotherapy
I have now completed the first four cycles of chemotherapy. has happened difficult. My wonderful clinic nurse explained that unlike some cancers, where the patient not only finds a lump before treatment but feels completely healthy, the myeloma patient begins chemotherapy already sick, in pain, and immunocompromised, and the treatment reduces this even further.
Six months later, I still need slow-release morphine twice a day for bone pain that causes constipation, along with daily thalidomide. (Thalidomide, the banned pregnancy anti-nausea drug, has now been reborn with anti-myeloma potential.)
Constipation is no joke, at least when it turns into fecal impaction despite a laxative regimen, as mine did early on. I’ll spare you the details, but a painful, disgusting and undignified situation sums it up. I am grateful to the woman with lymphoma who lay in the opposite bed throughout the night and pretended to be asleep the whole time. The twice-daily laxative drinks still give me the creeps, but now I drink them like free champagne.
After effects
Chemotherapy often affects the sense of taste, in my case I developed oral thrush early on, which I cannot shake off during treatment, causing my mouth to taste acidic All Time gives all foods and drinks a flavor that I call “bile pickle.” I can’t even go near chocolate, coffee, tomatoes, hard cheese, any kind of sauce, or any fruit other than apples and canned peaches. I live on a Complan diet of white carbs and raw vegetables, cookies, Coca-Cola, Philadelphia, pre-salted chips, scrambled eggs and strawberries. Aside from swimming with dolphins, my dream on my to-do list these days is to enjoy flat white and Lindt Ball again.
There is also the emotional aspect of the job. As an active, healthy, busy and supportive person – I did a lot of volunteering, including driving elderly people to the hospital – my life came to a halt and I became one of those people who needed direction. . I hate This. I’ve been in pain and feeling sick every day for eight months now, and that’s not going to change much this year at least.
Life after chemotherapy
Life after this treatment is uncertain. I don’t know if I will run again, it depends on how my bones heal. Increasingly, people are living with myeloma for years, but there will always be the next relapse and the next chemotherapy. Chemotherapy is great for fighting cancer, but poisoning yourself causes great harm to the body in the long run. My thick, curly hair has been this long since I was 18. Bald, I’ll look like Dobby (the whole family’s ears will stick out).
I cheered myself up by investing heavily in wigs and hats, including a pair from a drag shop. The man at the store said many women came in wanting something different from the chemo patient look. So I would argue that this was a deliberate trial decision. Blonde, long and silver, red-tinted tresses, Panama hat, fisherman’s hat – I have a wide range. I thought I was being extravagant until someone at the wonderful Maggie’s cancer center told me that she had spoken to a woman who had purchased 27 wigs, one for almost every day of the month.
Many have it much worse than me, of course, but it’s a struggle to adapt to a new reality and not lose yourself in the process. I don’t really relate to “warriors” and “journeys”; I’m not a “fight to my last breath” kind of person, more of a “do your best and then give up gracefully” kind of person. I don’t request It will be a huge expense for the NHS for years to come.
I post my troubles (mostly) warts and all on Facebook and get great support from family and friends. I am lucky. I’m not struggling financially and my children are at least adults, yet it’s hard on them too. I think at some point I’ll develop a new appreciation for life’s little joys and start saying “cancer is the best thing that ever happened to me,” just like people do when they look at the world with new eyes. But not until I eat chocolate again.
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