It was all go on the MyelomaUK Support facebook group and elsewhere yesterday, because of a piece in the Daily Mail (and also, I'm told, in The Times but I no longer have online access to that since they made such a mess of their website a few years ago. Maybe it's time I took another look...) I had intended to quote just a few choice extracts but in the end I decided to go for the whole thing.
It is of course first and foremost an attempt to sell a book. But it also generates a picture of the author as - well, perhaps I'd better leave that to you. I suggested on the FB group that perhaps she was more in need of a team of psychologists than of a haematologist. Here we go:
The call from the doctor came when I was
enjoying a drink with my partner, Seán, in a pub in Hastings Old Town, not far
from my home.
That day, in January 2019, the doctor told me
that I might have myeloma, an incurable cancer of the blood.
The Damocles’ sword of cancer has hung over
me for a long time. It’s what my family dies of, if the last two generations
are anything to go by. I lost both my parents and all but one of my
grandparents to cancer.
I was then 54, and had long been silently
waiting for another of our family to succumb.
But I’d only been for a kidney check-up after
a blood test had showed a ‘slight anomaly’. I had not expected this.
The doctor reassured me: ‘If you do have it,
the treatments aren’t too bad. You don’t get sick or lose your hair or
anything.’ But still. Cancer.
I went to the cloakroom and remember looking
into my own eyes in the mirror, and seeing strength enough for this. And it may
entail nothing, I thought.
In reality, though, my treatment —
repeated bone biopsies, a clinical trial that involved prolonged chemotherapy
and a stem cell transplant — has been horrific. It may, for now, have brought
my myeloma under control but it brought me to the very edge of my humanity.
In my professional life, I am a medical
ethics expert, having lectured on the ethics of medical research on humans and
advised the Church of England on such matters. I have set up Institutes for
Ethics at St Paul’s Cathedral and Westminster Abbey.
I have always tried to bring feeling and
emotion into moral decision making, but it wasn’t until I became a medical
guinea pig myself that I really understood the physical, emotional and
spiritual costs, as well as the obvious benefits, of such treatment.
How much, I found myself asking as I was
treated, should our doctors expect us to endure? To cope, I wrote to people who
love me about what I was going through. Here is a selection from those letters,
in the form of a diary unfolding in real time.
Friday, March 8
Seven weeks after that phone call, it is
confirmed: I have myeloma, a cancer affecting the white blood cells. My
prognosis is I will die in about ten years.
I try to think positive. In ten years, I can
do a great deal. And there are many things I don’t have to worry about. I’m
unlikely to die alone and incontinent in a home. I have no descendants whose
futures I want to see.
Yet when I read the booklet produced by the
charity Myeloma UK, describing the disease’s symptoms, there is a tolling bell
of doom sounding in my head.
Pain: 80 per cent have it, from bone disease
caused by the cancer (white blood cells are made in the bone marrow).
Memories of my mother’s pain from fractured
ribs caused by her cancer (malignant melanoma, that spread to her back) and my
father’s terrible cries of pain from his bone cancer, are there in my heart,
instantly. Bone disease means they break, especially the hips and ribcage.
There is also fatigue; overwhelming
tiredness.
Spinal fractures mean you compress the spinal
cord, and calcium is released from the damaged bone into the bloodstream,
causing vomiting, confusion and constipation. Spinal compression can lead to
peripheral neuropathy — numbness and pins and needles in the feet and hands.
Other symptoms: infection, kidney damage and
anaemia.
Now I’m frightened. It’s one thing to face
just ten more years of life in good health: what I could do with that time!
It’s quite another to live with symptoms like these.
But the ways in which symptoms are treated
are nearly as bad as the symptoms themselves.
One doctor suggests thinking of any treatment
as something additional that is necessary to life — like eating and bathing and
sleeping. Yet what lies ahead is to be little like a warm bath or a night
tucked up in bed.
Even the diagnosis itself has involved brutal
pain — a bone biopsy to extract my marrow, which leaves me braying like a
birthing mother, thanks to the anaesthetic working only up to the bone, not in
the bone.
The implements used are enormous, metal
chisel-like things with handles, to screw round and bore into the bone.
Friday, March 22
My treatment is at Guy’s Hospital in London.
Dr Matthew, the consultant, and Grace, the
clinical nurse specialist, are warm and caring. They say that while I don’t yet
have symptoms, I do have definite signs of the disease, with high levels of
abnormal cells and antibodies that will overwhelm my healthy blood cells.
I should, they say, have treatment.
A stem cell transplant is the gold standard,
the most effective way of controlling the myeloma. It involves destroying the
cancerous white blood cells, before my own previously harvested stem cells are
reinfused to replace the damaged ones.
The transplant sounds horrific. First, to
harvest my stem cells, I need ghastly growth hormones and other stem-cell
encouragement drugs, with grim side-effects.
Then there’s a day connected to a machine to
remove my stem cells. More nasty side-effects.
Then I will have a massive dose of
chemotherapy — with melphalan, which is based on the mustard gas used in World
War II, that will kill lots more of me than just my bone marrow and the stem
cells within.
Next, my transplanted stem cells are
re-infused into my bloodstream, bringing me back to life. Then there’s weeks in
hospital and months recovering — with another 18 four-week cycles of maintenance
chemotherapy.
But there is another option: I am offered a
place on a clinical trial, which I take, desperate to avoid the stem cell
transplant.
Four cycles of a new chemotherapy called
carfilzomib, which avoids one of the usual side-effects, peripheral neuropathy;
then random allocation either to a stem cell transplant or another four cycles
of carfilzomib.
In truth, neither road ahead sounds inviting.
Chemotherapy is given over two days each week for three weeks, then one week
off. That’s one cycle. I will have four of them, with numerous nasty
side-effects — despite what I was told by my first doctor.
Meanwhile, I still have to have stem cell
harvesting (all trial participants have this). After, we are to be randomly
placed in our trial groups.
Whether I end up having a stem cell
transplant or extended carfilzomib, the next two-and-a-half years involve a
journey from which I will not — to state the bleeding obvious — emerge
unchanged. Neither will I be cured: the treatment ‘should’ improve my survival
chances and control my symptoms. That is all.
Saturday, April 13
As the date for starting chemotherapy moves
closer, I am raw as an open wound.
Why am I about to start something that will
make me feel ill when I feel so well?
It’s so counter to assumptions I have relied
upon until now: you only take medicine if you feel ill, and medicine makes you
feel better. Not any more.
Thursday, April 25
I have to take a heap of pills in addition to
the carfilzomib. My poor doctor has to go through all possible side-effects of
the drugs.
They come as a barrage of muffled blows to my
psyche: extreme tiredness; risk of infection; nausea; vomiting; hair loss; sore
mouth and ulcers; anaemia; blood clots; impaired heart function; impaired
kidney function; change in sense of taste; rashes; ringing in the ears;
bruising or bleeding; numbness or tingling in the hands and feet; allergic
reactions; fluid retention; irritation of stomach lining and digestion;
diarrhoea; sleeplessness; unstable blood sugar; constipation; flu-like
symptoms; nail changes.
If I haven’t had the menopause, it will bring
it on; if I am pregnant, the foetus will be damaged.
My doctor also writes in specially: ‘rare
side-effect of death on the treatment due to infection’.
There is another dreaded bone marrow biopsy
at the end of the four cycles to see if the treatment is working.
Then, if I am chosen for stem cell
transplant, a whole new level of side-effects is in prospect.
It is too much — like being rushed off to a
holiday when you have had no time to pack. I hate being unprepared. Seán takes
me in his arms as I weep.
Thursday, May 2
My first chemotherapy session. Sitting
waiting, I think: thank God I have no children.
And then think: maybe I didn’t have children
because our mother died of cancer when I was 12 — and, consciously or
unconsciously, I couldn’t risk a repeat abandonment.
Friday, May 17
I can’t walk too quickly after chemotherapy:
it makes me feel ill, as though the poison is sloshing through my body. I
collapse on the stairs at home, sobbing. I feel sick. I want it to stop. I’m
vulnerable, raw, weak. Weak!
Thursday, May 30
Cycle two starts today. There’s also a phone
call from Grace with some test results.
A normal person will have between three and
19 kappa light chains (an antibody you overproduce with myeloma). When I began
treatment I had 1,102. I now have . . . 14!! So, obviously, I want to stop
everything. I almost don’t have cancer now.
No, says Grace, her voice kind. You carry on
with the treatment.
Of course. I still have cancer, and I will
always have cancer.
Friday, May 31
Another phone call from Grace: my levels of
paraprotein — an abnormal protein linked to myeloma — have halved from 11 to
six. (Normal people don’t have paraproteins.) This is, Grace tells me, very
good news. The treatment is working.
Friday, July 19
I stumble back to the flat, tears and mascara
running down my face.
After my third cycle of chemotherapy, I’ve
had my regular meeting with the consultant, who says that once I am through this
first line of treatment, we will ‘hope for two to three years of remission’,
before the myeloma returns and more treatment is necessary.
She had one patient — just one — who had 13
years in remission. It can be as short as seven months before the myeloma
reappears.
So now I contemplate another ten years of
life not just living with myeloma but being repeatedly treated for it.
No one had not said that. But the ‘new
treatments are coming on stream all the time’ response to myeloma’s
incurability had not translated until today into ‘you will be repeatedly
treated’.
Having been through treatment once — and I
haven’t yet hit the hardest bit — how can I want it ever to be repeated?
I weep. I will never be back to normal. It is
endless limbo.
Thursday, October 10
I learn that I am to have the stem cell
transplant. Hearing this feels worse than the original diagnosis of cancer,
believe it or not.
Friday, October 18
I am told I am in remission. I am in
remission!
So why am I about to have a stem cell
transplant, killing my bone marrow and rebooting my system so dramatically?
Because the incurable myeloma will only come back. My doctor tells me nothing
has yet been shown to better the stem cell transplant.
Again, we go through the side-effects, a 2-3
per cent chance of death among them. I will take three months to feel as well
as I do today. I sign the consent form.
Monday, October 28
Today is the 15th anniversary of my father’s
death from cancer and the day of my own little death from melphalan.
While my transplant is to take place at
University College London Hospital, I am to stay overnight at their Cotton
Rooms hotel nearby — a hospital bed within the comfort of a hotel.
If my temperature goes up to 38c, I have to
go into hospital because it means I have an infection. Once the melphalan has
killed off my bone marrow I am neutropenic — meaning I have no immunity at all.
Even bacteria in my own body can cause infection, and infection will kill if
not treated.
Cold dread has seized me. I am infused with
melphalan. It only takes half an hour but is a killer.
Back in the hotel, I feel strange. I have
some mouth ulcers (already) and a queasy stomach.
Tuesday, October 29
I haven’t slept and feel shivery, queasy,
sniffly. It occurs to me the one thing that cannot happen is that I do not
receive my stem cell transplant tomorrow.
I’ve had the killer melphalan: if I don’t
have my stem cells, I will die. I throw up.
Wednesday, October 30
I have my stem cell transplant. The nurse
brings in two frozen bags of what looks like gloopy blood — the stem cells I
last saw being extracted from my veins at the end of September. She thaws them
in warm water and they are infused into me.
Thursday, October 31
It’s my birthday. Seán gives me a horseshoe
for my present. I am very low. I feel sick, tired, useless, bloated, hot — and
the melphalan side-effects, apart from nausea, haven’t even begun.
Saturday, November 2
Every mouthful of food is a struggle. My
throat is swollen; my mouth is sticky with mucous. But I manage some crackers
and yoghurt. (‘Don’t get out of the habit of eating,’ say doctors.)
Then I vomit. It feels as if my hard work has
been destroyed. But the will to live is in me.
Monday, November 4
My throat is swollen. I am nauseous,
nauseous, nauseous. And now, diarrhoea. I sweat. I have an angry, itchy rash
all over my neck and torso.
I can’t just lie in bed and quietly die. I
must eat and keep it down. I must take my drugs, get up, shower, dress, walk to
the Cancer Centre. I am exhausted. and rest between every action.
Tuesday, November 5
I feel worse and worse. My mouth is full of
ulcers, my tongue is coated in slime, my throat is swollen. Everything hurts. I
throw up. I am cold.
Wednesday, November 6
At 8pm, nauseous and weak, I find my
temperature is 38c. I am told to come to hospital and am relieved. Overnight,
nurses come in and out and do things to me, as I lie helplessly, being kept
alive.
The horror. The horror. How can anyone feel
like this and keep on being alive and human? The cruelty of melphalan,
destroying my alimentary canal when I need it so badly to get well.
I cannot clean my teeth. I sweat. I am so
cold. I am in hell, being tortured. But hell is a bright, clean room, and my
torturers, the nurses, healthcare assistants, the beautiful man who takes my
reluctant food orders, are full of kindness.
Sunday, November 10
I am no longer neutropenic, the nurse tells
me. My stem cells are up and at it. I’m out the other side. Except I’m not. I
have bone pain from the stem cells; my throat hurts; I have a temperature and
I’m crying my eyes out. My hair has moulted so my pink scalp is visible. I am
crawling out of hell.
Doctors say my case is ‘plain sailing’. I
shudder for those of my fellow patients who did not sail well.
Thursday, November 21
I have started lying about my symptoms,
because every time I name one I receive a drug to deal with it. I am in
rebellion against being treated like a machine.
Saturday, November 23
My temperature is 36.5c. I start to believe
that one day I will go home.
Sunday, November 24
A message from the doctors: ‘The lady in Room
6 can be discharged.’
Monday November 25
I am home. Home! The next day, I eat a boiled
egg and relish it.
Postscript
The physical reality of the stem cell transplant
is something I so want to describe.
Why? Because if medics can really hear how
brutal a treatment it is, might the research question be asked: what is the
alternative? Doctors try to be kind but they cannot know the pain. Only I can.
So pay attention, medical profession, as you
dole out melphalan because ‘it works’; or design research protocols with
multiple bone marrow biopsies because these give you neater measurements than
blood or pee.
You do not bear the cost. I know I am going
to die, probably of myeloma, even if treatment gives me more years.
Still, I will not let cancer be the cause of
bitterness. I have discovered there are many miles to go before that final
sleep, and the miles we walk actively create meaning — and the meaning is beautiful.
Adapted
from Miles To Go Before I Sleep, by Claire Gilbert, to be published by Hodder
on Thursday at £16.99. © Claire Gilbert 2021. To order a copy for £14.95 (offer
valid to March 23, 2021; UK p&p free on orders over £20), visit mailshop.co.uk/books or
call 020 3308 9193.
A lot of people have argued that this would be very frightening to those newly diagnosed. Others have said that it in no way reflects their own experience, and inevitably there have been a few responses along the lines of "You think that's bad? Nothing compared to what I went through!"
On the whole I think it says more about the author than it does about myeloma. People with the disease will be able to make their own judgements. People not touched by it may at least get some idea of what it's like, if perhaps a distorted one. In Myeloma Awareness Month, perhaps "there's no such thing as bad publicity."
Behind all the anger and the self-pity and all the rest, there are grains of truth. I appreciated the strange comfort that comes from knowing how you are likely to die, and the alternative deaths you will probably avoid. I've felt all of that. As for transplant, it reinforces my feeling that I never want to go down that road. despite the many people who report a far better experience and years of remission.
I have one problem. To buy the book or not?
Whatever the answer to that turns out to be, this piece will have made a lot of people who had never heard of myeloma aware ot it, and that can 't be entirely a bad thing.
I hit my activity target again, despite a rainy day keeping me inside. The Furosemide pill I took at about 10:00 had no effect for a couple of hours, and then I was in the bathroom at least once an hour until the evening. If I had gone out for a walk I would have had serious need for those convenient bushes...
