The Blame Game Part 2

It was a beautiful sunny day and despite being stuck in traffic I was in a good mood.  I took the opportunity to do some bad singing and shoulder dancing to cheesy pop songs on the radio. Then the commercials came on.

Rousing intro music…

Daughter: “Cancer, you’ve messed with the wrong person.  My mum is going to make mincemeat out of you”

Mother: “Cancer, I’m going to put you over my knee and spank you.”

The sun was still shining but all the happiness fell away.

The commercial sounded like a battle cry against cancer but the not-so-subtle message is  people with cancer will be ok if we just ‘fight’ or ‘spank’ hard enough.

My knuckles whitened around the steering wheel.

 

 

 

 

 

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The Blame Game Part 1

I hesitated at the entrance to the health centre.  I didn’t want to walk through the echoes of visits past.

This was the same surgery I went to as a little girl with my mum.  When they called our name mum would hurriedly grab my hand, flying me across the room towards the office. If a coat dropped, a bag got caught on a chair or anything delayed us by even one second it felt like the end of the world.  This was a place of injections, seething with germs and, for mum, a race. It was all about getting, as quickly as possible, back to the sanctuary of outside world.

It was the same waiting room Mum sat holding my sister in her arms watching other children doing wobbly toddler walks.  She stared at the same desk and filing cabinets as she came back visit after visit.  Again and again she heard a doctor sigh and patronizingly explain “All children develop at different rates,  your daughter is fine”, then give a look as as if she was the one with the problem.  They were wrong.  My sister had severe special needs and mild cerebral palsy.

This was the same place mum came to several times for help with her persistent stomach pain.  Again the doctors didn’t listen to her even though she was a 59 year old woman with a strong family history of breast and ovarian cancer with text book symptoms.   Months went by until mum was too sick to work, the doctor did a little back-tap and declared her lungs were fine.  Three days later mum was in hospital.  Her lungs were almost full with liquid.

It was on these chairs that I nervously waited holding mum’s handbag, coat and gloves.  They weighed almost as much as she did.  She was dressed immaculately, wearing one of her beautiful dusky pink headscarves and long white cardigans while we waited for a nurse to change her dressings.  I tried to touch all the doors for her because with her low blood counts catching even a small infection could kill her.

It’s here that I stood in line shaking and crying uncontrollably, fearing I was having a complete nervous breakdown.   I’d had a complex relationship with my mum, where for most of my life she completely loved me, 80 percent.  The other 20 percent of her despised me.  As she was getting closer to dying the ratio flipped the other way.    My heart and my nerves broke because, despite trying everything I could, I was losing her before I lost her.

It was down these corridors I walked heavily and painfully towards the grief councilors office.  I was trying to figure out how to get through the devastating loss of my mum while having a severe reaction to bone drugs making it hard to move and sometimes impossible to walk. My own cancer drugs made me suicidal so I had to stop taking them.  To up the fear ante I lived for 3 months with a scan saying an enlarged node was “suspicious for metastatic disease”.  I had lost my country, my home, my doctors, my support and was more alone than I had even been. I didn’t have the option of not being alright.  I was here for my sister, I couldn’t be sick or incapacitated.

The wind whipped around me as I stood watching the doors of the surgery slide open.  On this occasion I wasn’t there to report new painful side effects or to get results from a scary scan.  I was just there for a routine common garden variety pap smear.  I took a step while reminding myself to chill out.

I didn’t know that English pap smears were so different from the ones I got in America.  Firstly it was done by a nurse  who I thought was taking a medical notes but half way through I noticed she wasn’t writing down the answers to the questions she was asking.  I got the feeling she was just interested.  She declared she didn’t think lesbians needed a pap smear, I let her know politely that wasn’t true, inside I was screaming ‘you should know this’.  I took a quick look at the paper, it was just a bare bones of a form.  I was used to a pap smear as part of what we used to call a girlie exam, when a doctor also does a breast check, asks about sexual health and tells you random things like your uterus is tilted etc.  In the UK a nurse just does one thing, a swab.

I was up on the table, naked from the waist down, legs wide when the nurse mused aloud,

“I wonder if the stress of your cancer caused your mother’s”.

I couldn’t take in the enormity of what she had just said because a second later the speculum went in and I experienced one of the top five worst pains of my life.  Which after multiple surgeries and cancer treatment I feel is a pretty high bar.  Then the pain came again until I screamed, “Stop”.

She couldn’t find my now post-menopausal cervix.  She had to get another nurse.  They didn’t seem like nurses they seemed like older lady volunteers, who received a 15 minute training.  They had another go at which point I was shaking and starting to cry saying “this isn’t important we can just stop”.

I was so grateful to be off the table, I reacted like someone with Stockholm syndrome, thanking my captors for releasing me, so much so, that I told them how nice they were before running out of the building.

The rain whipped my face as I hurried down the familiar cold grey streets.  The physical pain of the exam started to ease but the pain of the blame was just beginning.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Life and Laundry

I wake up alone in my Mum’s flat, where she used to wake up alone.

I drink tea out of Mum’s favorite delicate thin-sided china mug as I lean forward on one foot and slightly crane my neck to stare out of the kitchen window wondering whether to put the clothes out on the line.   I look over the top of the other flats at the gray-blue sky and waving green tree tops. I’m in the same pose at the same window Mum stared out of every morning for 31 years, searching the English sky for some indication of what the weather will be like, as if our weather was a knowable entity.

I pay the bills that used to come in her name.  I iron the tea towels.  I worry about my sister the way she did.

I sit on her couch, in the same spot she sat when she couldn’t get comfortable.  I stand in the shower where she rubbed her stomach and wondered why she was bloated.  I cook with the baking sheet that she would fill with vegetables, hoping that enough of them might do the trick.  I wear the coat she wore as she tried to walk off the heaviness in her stomach.  I wear the boots she wore as she became so tired, so tired she didn’t want to go to work.

I’ve sat in her living room with my knees up to ease the knawing pain in my spine.  I’ve turned around in the shower thinking the heat might help the burning sensation in my lower back.  I’ve eaten kale believing it will make it better.  I tried to ignore the pain increasing daily which made my walks become shorter and shorter.

My mum waited months to find out it wasn’t a lingering stomach bug.  She went into hospital where she found out she had ovarian cancer.

I waited months before finding out at the same hospital that the growing ominous pain in my back was not my breast cancer spread to my bones.  Instead I have regular-people-problems of multiple prolapsed discs causing nerve compression. My nervous system reacted like I’d received a stay of execution. They are frayed from my whole life depending on the end of a sentence starting with “Your scan showed……”

It’s not the first time I’ve sat alone in pain, knowing my risk of reoccurrence, strangled with terror.

It won’t be the last.

I live with death.  It is in every lotion that outlived my mum.  Death is with mum’s coffee still in the fridge, the good kind, to offer to guests.  I live with it in every pain that sears through my body.  I live with it every time I have to mentally take note of a new symptom and how long it stays.  I live with it every time I see my sister smile.  I live with the knowledge that there is no one else that can give my sister the support I can, that although I live with death, on her behalf, I cannot, I will not, accept it.

The statistics for a woman under 40 with a hormone positive breast cancer is one in three of not surviving 8 years.  I’m not great at math but that puts me at 33 percent chance of not making it 5 more years.

I have to live, but I know that there is no difference between me and the 33 percent of girls who won’t make it.  Just like there is no difference between my mum who passed away in eleven months and women who live for decades with ovarian cancer.  The thin walls between healthy and sick, alive and dead, between mother and daughter are now translucent.

I take the clothes out of Mum’s washing machine and put them out on the line.  It’s becoming less strange to me that in one of the wettest countries we insist on hanging clothes outdoors.  As I become less American and more English I agree with mum that the sheets smell so much better dried outside than in the tumble dryer. She would say it’s worth the effort of putting them out “even for only an hour”.  It is also just as possible I’m becoming less Tatum and more my Mum.  We’re almost the same height, both with curly brown hair and as the pillow case billows in front of me I see a passing neighbor give a double look. I’m not sure who they saw.

I look up at a heavy gray cloud.  I hesitate whether to bring the clothes back in.  I take the risk and leave them out. I think that’s what Mum would have done.

The English weather can go either way.

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The Unofficial A-Z of Hot Flushes

I have become a bit of a menopausing hot flushing expert over the last three years so here is a fun article I wrote about what I have experienced…

 

Most of us will get hot flashes but what they don’t tell you is that most of us won’t get

the same type.

Some of us will flush for 30 minutes while others will only get a 30 second

flash. 25 percent of us won’t get any menopausal symptoms at all. Whether you are a

flusher, a flasher or lucky as all hell, here’s an unscientific look at menopausal hotness

 

A is for Anxious. These fluttery hot flushes live to amp up existing drama. They lie in

wait until you are late for work, drop toothpaste on your blouse and lose your keys.

B is for Blush. The face-reddening flushes like to strike when talking to a friend’s

gorgeous husband or when someone’s sandwich is missing from the fridge at work. Of

course you don’t want to sleep with your friends husband and you aren’t a

lunch stealer but the blush-flush makes you look guilty.

C is for Cold. The same hormonal problems that make you heat up, can also work in the

reverse. An icy sensation sneaks through your flesh and into your bones. Instead of hot

flushes these are the cold creeps.

D is for Delectable. It’s always when you’ve made a delicious hot dinner that a flash

comes along and suddenly it’s the last thing you want to eat. On the plus side, there’s a

new reason to eat salad.

E is for Emergency. Women have rushed to A & E fearing a heart attack.  Turned out they

had really bad hot flashes.

F is for Fans. Adoring masses are always fun but in the middle of a night sweat, the

electrical type, perfectly angled to blow blissfully cold air, is far more satisfying.

Fans

G is for Ginger. If you get queasy hot flushes it’s worth trying this homeopathic

approach.  If it works for you that’s great, if not, it’s an excuse to have an extra

ginger biscuit.

H is for feeling Hot Hot Hot. Even though Buster Pointdexter was a man he wrote a hot

flash anthem, “Me mind on fire –Me soul on fire — Feeling hot hot hot”. Buster turned

heat into a dance and so can we.

I is for Ice. Never underestimate the power of a well-placed icepack.  They can be put on

your pillow, tucked in your cleavage or surreptitiously slipped up a skirt to the inside

thigh for instant relief.

J is for Joking. Hot flashes are silly ridiculousness. Make up silly ridiculous jokes about

them.

K is for Keep Away. That’s what you want written on a flashing red sign when you’re

boiling hot and your other half goes in for a cuddle.

L is for Layers. Repeated hot flushes in tight polo neck wooly jumpers should be made

into a punishment reserved for the vilest of criminals. Don’t let this happen to you.

M is for Mood swings. Hormones aren’t just for ovaries. These mysterious chemicals

play a part in regulating body functions from our hearts to our brains. So when

they are behaving erratically, is it any wonder that you might too.

N is for Naked. You used to have other kinds of clothes-free fantasies, now during a flush,

your imagination goes wild, thinking about streaking through snow.

O is for One-Liner. People can often get worried, curious or perturbed by your sudden

heat and subsequent stripping. Have a one-liner ready to go to allay their concerns or if

you’re so inclined, confuse them even more. Whether you want to explain that you are

having your own private summer or claim, “This envelope is wet.

I’m waving it around in front of me to dry it off.” Having something to say is empowering.

P is for Panic. If you’re in the supermarket hyperventilating over what type of lettuce

to buy, it might be the beginning of a hot flush. Put down the lettuce and head for the

freezer section.

hot_flashes_rectangle_magnet

Q is for Queasy. Nauseous hot flushes feel like a bad case of seasickness. Slow deep

relaxing breaths can help but if the thought of that makes you feel sicker, then try

playing a zombie game on your phone.

R is for Red. This is the colour of heat and often the colour of your face. If you can’t

match the hue of your flushed neck to your vibrant red dress, its best to go with the blue

one.

S is for Showers. This is the perfect place to get a hot flush. Turn the tap to cold and

relish the joy of instant temperature adjustment.

T is for Tears. Bring tissues, wear waterproof mascara, and then remember the silly jokes

you made up.

U is for Unrelenting. Instead of being spaced out, these flashes all want to get together

for a big flash mob party. It ‘s hard to catch a breath before the next one comes along.

Imagine you’re celebrating with them, it’s an excuse to eat ice cream.

V is for Vicious. Sometimes flushes are unfairly tough. It feels like you are getting

picked on and everyone else’s flushes are a tropical breeze in comparison.

W is for Wine. Although a glass of red wine is a lovely way to unwind after a day

of sweating, layer adjusting, and embarrassing blushes, alcohol, along with caffeine, can

induce even more hot flashes. This is completely unfair.

X marks the spot. You know that person’s name, you’ve been married to them for ten

years, you have two children together, you woke up with them this morning, but as a flash

comes on there is a only a blank X in your brain where their name used to be.

Y is for Years. Everyone’s menopause is unique, but the average woman experiences

theirs between a 2 to 10 year window of time.

Z is for Zanier. That’s what life with hot flashes just got.

 

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Brackley Road

I had to post a letter today so I popped it under my arm as a reminder.  I remembered it was there five minutes after I passed the post office.  I looked around for a red post box.  Then I spotted one.  At the end of the street I used to live on.  I moved back to England two years ago but I haven’t walked down that road since I’ve been back.

I lived on Brackley Road from the age of 18 months to almost six.  As I walked up I thought back to the day we moved out.  It was Charles and Diana’s wedding day.  I was distraught when the TV was unplugged to be packed in the car.  I knew I was missing out on a national fairytale. We were going from a home where my Mum, Dad, sister and me shared a room, to one where me and Lisa had our very own bedroom.    I remembered consciously trying to have a reasoned response to missing out on the celebrations.   As we were making that last drive over to the new house I peered out the car window to see murals commemorating the day and people out in the middle of the road with BBQ’s, party hats and drinks.

As I turned the corner of the small tree-lined street I felt tall.  At 5 foot three I don’t have that feeling often.  I wanted to crouch down to see the road from the perspective I remembered.  I looked at the cracks in the pavement and carefully avoided them. I could almost hear mum’s voice telling me to ‘Get a move on’.  I was often distracted by the floor.  My childhood OCD came flooding back.  It wasn’t enough for me just avoid treading on the cracks.  Back then I saw invisible elastic bands stretching out from every corner.  The edge of a car, a front gate, door ways and post boxes would all have them, most often two or more.  It could take me a while to walk, between navigating cracks and stepping high enough to cross over the elastic bands.  I believed that if I ignored the bands one day they would stretch to full capacity and catapult me backwards.

The trees are now taller, the gas station on the corner has been turned into an obnoxious glass bank with luridly bright lettering and many of the houses are freshly painted, but when I squinted I could see how it used to be.  I looked down and saw my brown round-toed shoes and socks with a pink frill.  I could look up to see my mum’s young face.

Mum said that when I was born my Dad didn’t let her go out without me for five years.  She had to take me with her when she had cleaning jobs.  She worked hard for me and then for my sister Lisa, who she was born when I was 4.  My Dad was a chauffeur slash body guard.  In the living room he would teach me ‘how to kill a man’.  Unfortunately I forgot how to do that but do remember hanging out in Karate kid poses wanting to learn how to use numb chucks.  Dad wouldn’t go to work until I was in a state crying and begging him “don’t leave Daddy”.  Once out the door he would come around to the window where I would slam myself against the other side wailing.  Once he had gone and my acting job was over I would calmly go back to playing with my toys.  Mum said later that I seemed to understand that’s what he needed.

Dad took me to McDonalds on days Mum wouldn’t have. He taught me to say that mum’s tea was yucky.  He wanted me to say I loved him more than Mum.  Even though I was four I knew I was being used as a wedge in their relationship so when mum was angry with me, I felt guilty.  One night I had a dream that I was using the bathroom but of course I was actually wetting the bed.  Mum was furious and said I was lazy. She accused me of doing it on purpose. She said I didn’t care that she had to clean it up, she added that I was not just lazy, but selfish and lazy.  I believed her.

When Dad gambled the money for our food and bills, Mum made sure we were fed.

I wanted to walk down that street and relive unbridled happy memories.  I wanted to feel a connection to my mum, to see where she lived as a 25 year old, to maybe understand her. I wanted my grief to be uncomplicated.

As I walked towards Number 5 I thought about an alternate reality where things had gone to plan. I would have been pregnant at 36 and right now my little girl would be almost two.  I would be walking down this street while on a visit over from America with my daughter, showing her where I lived when I was her age.  We would take pictures near the Charles and Diana mural.  Maybe mum would be with us.  Maybe she’d share some light on why she both loved and hated me. Maybe she would have stopped despising me. Maybe that would have been enough.  Maybe we would have grown closer like my mum and her mother did later on in life.

Because of cancer I don’t have a daughter, ovaries or reassurances of a long life.  Because of cancer my mum isn’t here at all.  Because of cancer there is no more time with my mum.

I stopped stepping over the elastic bands at around eight.  Even though I got as far away as California,  I have been catapulted back.

Back to where it all began.

 

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Private

My mum is intensely private.  I’m not sure if it’s because she is middle child of 12 children, or Irish, or of a different generation or simply because she is so independent that she hasn’t felt the need to share.  Whatever the cause, I do know that she isn’t comfortable in the spotlight.   I can only imagine how mortifying it has been for her to have me as a daughter.   My mum is a master of deflecting conversation, I over-babble.   Only those who can read deftly between the lines can even begin to know what my mum is feeling, I will share my greatest fear in relationships with the guy beside me on the plane.

My mum says she is happy for me to continue writing this blog but would like me to only include the parts of her journey that affect me.  Of course everything about my mum and every part of what she is going through has a huge, unimaginably huge impact on me.  I would write it all, but it doesn’t take much reading between lines to know thats not what she wanted.

If I don’t mention my mum in future posts it isn’t because I am not affected, it is quite the opposite, me not mentioning my mum is because I really love her.

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Mum

Early one morning just days before my surgery, my ever-so-healthy mum, who lives in London, called to tell me she had been admitted to hospital.   I tried to focus on what she was saying while I struggled to comprehend the image of my active, yoga-fit mum in a hospital bed. I knew she hadn’t been feeling well. She had wanted come over to LA to be with me for my lumpectomy but a stomach bug kept her from being able to.  She said she had some respiratory issues and the doctors were just monitoring her. My head spun. Mum made it sound like nothing to worry about, but I felt sheer terror. When I hung up, Lauren asked if everything was ok. I grunted a negative response without actually answering no. I was already on the computer furiously researching my mum’s symptoms.  My head was practically inside my screen as I scanned medical publications, selected what looked like legitimate message boards and tapped into Google every variable of every tiny thing my mum had said that might be a clue.   After that I called mum back and asked her which tests they had run on her she gave me her answers, and I returned to Google.   All this time Lauren hovered nearby unsure of what to do with a manically googling girlfriend.  Eventually, I stopped typing and reading and looked up at her. My body was shaking as I  declared, “my mum has ovarian cancer.” Lauren comes from a family of doctors and nurses so she places great trust in the medical profession, so when she calmly asked, “Is that what the doctors said?” I interpreted her words as her telling me I was crazy, cancer crazy.   My stomach churned uncontrollably, my voice rose, and I heatedly explained that although the doctors hadn’t said so, I knew. Inside I had doubts. There was still a logical part of my brain that said it was impossible for me to know based on such little information. Lauren reached to place her hand on my knee. I pulled away and spat out, “don’t you dare tell me it’s ok, that it’s going to fine. Don’t you dare say that it’s is unlikely to be the worst case scenario.” Of course, I wanted her to tell me exactly that; but I wanted her to magically possess some absolute knowledge about my quietly strong, fiercely independent and loving mum. I wanted her to definitively know mum just needed some antibiotics and these would make her be fine.   I must have had a dangerous glint in my eye because Lauren delicately stepped backwards. My voice got more desperate as I cried,. “Remember when everyone said it would be ok with me? It wasn’t. They were all wrong, remember? But I knew, and I thought I was nuts, everyone made me feel crazy, and this is what that feels like! I know she’s going to a respiratory specialist, and it might be an infection. I know that, but I don’t think that’s right.  I don’t think she’s telling me the truth. , I think she has cancer, and I think she knows…” I sank sobbing to the floor of my newly brightened bedroom.  “I’m going to have to go home,” I wept. “Mum will need help and so will my sister. Oh my god, oh my god, this can’t be happening to my mum.”  Lauren knelt down abeside me and patiently waited until I was ready for a hug. Gently she tried to remind me that we didn’t have any information and perhaps it was best not to leap to conclusions.  I let her hug me. I leaned into her and asked, “Is this because I have cancer? Is it because I have been living it and surrounded by it for months? Is that why I feel like this, is that why I think my mum has it?  Am I crazy. Am I cancer-crazy?” Silently I wished she would tell me I was certifiable, but she knows me too well.  She knows that I would just start the cycle all over again, that once more I would recite all the reasons that it looked like mum has cancer, and how no one in the world can tell me everything is going to be ok. Over the following days, I talked to Mum several times. She told me she was feeling better, and my cousin, who is a doctor, sent me a note saying that Mum was probably a bit run down and might have had an infection.  I wanted to believe both Mum and my cousin, but I didn’t. Every day when I hung up the phone I’d swing back and forth between mentally moving home and then stopping myself from making such plans, calling myself delusional for even thinking such thoughts.  I relived waiting for the results of my own cancer. The feelings of terror, confusion and isolation were on a loop. I thought I might have cancer PTSD Two painfully slow weeks passed. Mum still had no results.  I could no longer contain my fear and frustration, so I composed myself and decided we had to talk about it. “Mum,” I said gently,  “You need more tests, you need results.  I am very worried about the delay. I hope it’s not serious, but just in case it is, every moment matters.  Mum,If, God forbid, it’s ovarian cancer, they need to act fast.” I heard a small inhale intake of breath on the other end of the line.  I didn’t want to worry her, but I knew she needed more tests and I wanted her to demand them. “Tatum,” my mum said in her softest voice. When I heard that, I sat down.  My heart knew what she was going to say but my head screamed, “Nooooooooo.” She told me “they changed the specialist. I’m going to see an oncologist. It’s cancer.” For the second time, cancer broke my heart. This time it shattered. And in that instant everything changed.

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