Listening to Vicky and Emma these past weeks and days has been heart breaking. They are mums who are victims of a massive scandal of misinformation and miscommunication around cervical cancer and who now find themselves living with terminal cancer. With advances in treatment their cancer should be the least significant thing in their lives and it should absolutely not be the thing that will cause utter devastation for their families.
That would be a wish that all of us mums with cancer would have – that it would not devastate our families by taking us away from them.
When you go for screening for any illness or when you have a suspicion that something is wrong in your body, you want and need the experts around you to act with haste. You want all the tests that there are so as you can get to a diagnosis as soon as possible. Ultimately you want a timely diagnosis and a treatment plan.
When you are in the middle of treatment for a serious illness you want to know that you are getting the best of care and the newest and most effective drugs. You want to know that there is no delay in any aspect of the treatment and that no one is found wanting in their duty of care towards you. You want to know that every single person in your chain of care is throwing everything including the kitchen sink at your illness!
When you do find out you have cancer, as a mother, your first concern is your family and specifically your children. You immediately move your needs down the pecking order and think of your children first and then your husband and partner. Practical issues come to the fore:
- how should you best break the news to children?
- do you need to tell their schools?,
- do you need to involve the parents of your child’s friends?
Time becomes an issue as you want your kids to hear the news of the diagnosis from you but you need time to come to terms with the news yourself. Then your thoughts turn to managing the illness and the treatment so as you can still be Mum/Ma/Mammy/Mother.
More practical things come to the fore as you face into active treatment and time in hospital as inpatient or in the day ward:
- Who will do the school run that is usually done by you?
- Who will make sure the white shirts continue to come out white in the laundry when your husband has a habit of putting everything into the same wash at 60 degrees?
- Who will read to them before bed when you are away in hospital and your husband is with you?
- Who will know how they like to be held when they are ill/sad/hurt/scared?
- Who will make their lunch just the way they like it?
When you are dealing with an incurable cancer that has the potential to be the thing that kills you, you start to do the maths and make bargains with yourself and even with God:
- please just let me live until they start school or finish school.
- Please let me have time to allay their fears and concerns
- Please let me hang on for the small milestone
The maths and the bargaining increase as you move on in treatment. Time is everything. When you are coming to terms with a diagnosis of incurable cancer or terminal cancer you want to know exactly how much time there is. It’s not time to go to Disneyland or on some grand cruise, it’s ordinary everyday time to make memories and mischief with your kids. To make sure that himself knows where everything important – like birth certs and their first drawings are; to have time to listen to what the kids need to say to you; to tell them every day that you love them; to write letters to them; to close out loose ends, to just sit with them and try to impart a lifetime of stored up wisdom and guidance that you have been saving for them as they grow up. Time is everything.
As a working Mum you worry about financial security and the extra financial burdens on the family if the worst should happen. You want and need time to make lists and to plan – that’s what us mothers do!
I am that mum who was told she has incurable cancer. My presentation with concerns was taken seriously and I was given blood tests that day. I was in hospital that night and had a diagnosis within eight days.
The date I got the news was 10 January 2007. I was 38. I was in the same age range as Vicky and Emma are now. My kids were aged 9 and 2.
It was a stark diagnosis. Myeloma is incurable but treatable to a point but with no absolute guarantees of success. I was horrified and terrified each time I thought about not being around for the kids and for Bryan. The first question and fear I had was whether Cathal would ever remember me as his mother as he was only 2. Then I had frustrated and angry tears at the thoughts of Emma going through her teenage years without a mother to argue with and to confide in. And then I had to look Bryan in the eye with my diagnosis and try to find the words to express the lifetime of love we might never have because of the cancer.
The day after the diagnosis we knew the plan of treatment and the goals we had to achieve to try and get out the other side of an incurable cancer. While the treatments are well tested and used more and more every day, I was a member of a really exclusive cancer club – only 222 people are diagnosed every year with my cancer here in Ireland and only 2% of all those diagnosed with myeloma are under the age of 40.
The treatment began in earnest on 11 January 2007. It was a year long process from initial treatment and chemo; to stem cell harvesting; and then in July 2007 a stem cell transplant. The treatment was harrowing and difficult and there were times where there were some doubts about whether I would come through it fully. I was gravely ill as a result of the side effects of the high dose chemo.
After a month in isolation, ten weeks in total in hospital, I was told I was in remission – the date was 26 September 2007 and it felt like I was being given back my life for myself but for my family too.
We did nothing extravagant to celebrate – we were emotionally exhausted, drained from the relief of the news and I had a long road ahead as I was physically very week. Even after the word remission was spoken, I was told there were no guarantees.
Eleven years later I am still here living with an incurable illness. The nine year old is now 21 and has just finished college. I have gotten to see her blossoming into a beautiful young woman. The two year old is now a handsome young man of 13 (almost 14) and he is just finishing his first year in secondary school. I have had the luxury of time.
I feel so frustrated and almost guilty that I get to have time that some of these other beautiful and brave women caught up in the cervical cancer scandal did not get/might not get and will not get. I am so angry that the people who were charged with looking after us, did not do their jobs.
That beautiful and brave young mother Emma’s words from her Morning Ireland interview this morning will haunt me forever as she has the same fear about her kids remembering her after she is gone. I shared that fear about whether the kids would remember me and would know that they had a mother who loved them and who was proud of them every day of her life.
My daughter wrote this poem about me and it captures the essence of what she would have been prepared to do if I had to say goodbye. My daughter Emma would have been prepared to ‘dream of a heaven without her for me’ and she would have made sure that her little brother would have known about me and never been allowed to forget me….
There are no words I can say to Vicky, to Emma and all the other women other than I’m sorry. I am so sorry and so angry that you have all been so badly let down……that those people who should have been fighting for you and your survival have utterly failed you….I am so sorry. I hope that you will continue to fight and to make memories with your families……We will all do our best to make sure you are never forgotten….
In Heaven There Are Beaches
a poem by Emma Tobin
When I was nine you turned into a skeleton,
and disappeared, new car with uncomfortable
seats. I forgot where I parked you and our souls
entwined in some bloody and primordial
place threatened to rattle apart like trollies
in hospital corridors that never go anywhere.
Speaking of going places I wondered, where,
as you dwindled and ruptured and women in off-green
cheerfully hooked you up to hang on the edge
of existence. You lied to me about what was
wrong but reflected in your bloodshot eyes I
dreamed a heaven without me for you.
Even though such a place could never exist, futile
among the strangling wires of your life
lines. They pumped you full of chemical bullets
to kill the monster inside you and I watched
like a child (I was a child) unwilling to admit
that mothers should die first.
The inside of your mouth a battlefield of bloodied
flags wedged between your molars, God spurting
from your nose. Your face a scar-flecked landscape where
there are no words for watching your mother cave in.
Bailing water out of her stomach, you taught me
to swim and now I watched you drown.
You were some grand theatre I watched from
the doorway hiding hands in my pockets. I
was afraid you’d see the ghosts of funeral
handshakes. You were not a woman we would
not bury a woman, but the soul of everything
I wanted to be.
My friends were scared of turning into their
mothers but mine saw God in bloodstains and
mine almost slipped between my fingers. They
were small fingers I imagined them raising
your son and fixing the collar of his school
uniform. I’m sorry I imagined.
I would have told him that you were like
beaches and tides you were a love that
always came home. You would wear us
smooth until we shone and take us away
in your pockets. He would have known
that you’d leave heaven for him.
When I was ten they sent you home in gauze
and I did not trust your bones to hold
you together for years. I snuck around you
with scaffolding and glue until I could
shout at you again. Not the big bad wolf
your daughter who couldn’t blow you down.
I did not always believe in this, your shadow
on the other side of glass your shoes on the stairs,
your voice somewhere nearby. I think I might be
imagining you sometimes I think I might be mad.
I think we might be alive.
Copyright: Emma Tobin