A mother’s perspective- Part Two

Chemo –  Here we go …

Having had the formal diagnosis of Hodgkin’s Lymphoma Stage 3b, I couldn’t wait for Megan to start the chemo to begin blasting this thing into kingdom come. She was meant to read all the leaflets before signing her consent – Dr S. even threatened to test her before she could start. But where were all the leaflets? Gathering dust, unread, under her bed!

The morning of the first chemo she WOULD NOT get out of bed. I knew she was stalling.

Eventually, she came downstairs: tears streaming down her face. Quietly, crying.

My stomach was in knots and I knew too well the dread she was feeling. The fear of the unknown was the scariest thing ever.

Elin, one of her best friends rushed over just as we were leaving, with a gift, a necklace with the caption: “Fe gerddaf gyda thi beth bynnag a ddaw” – I will walk besides you no matter what. This simple phrase and gesture summed up everyone’s feelings.

She wept nearly all the way there.

Inside, quietly, my heart was breaking but I daren’t show it. It was enough for her to deal with her own fear, let alone mine.

Chemo days are long and tedious. The waiting is dull, monotonous. You sit and wait for your name to be called then you wait more because the chemo only goes ahead if the bloods are right.  But it feels safe there.  The entire staff are amazing.

There was no-one there of Megan’s own age. She departed into her bubble, escaping to the digital sanctuary of her i-pad. You don’t have to talk to a screen.

She was under the care of one of the youngest nurses there, who, funnily enough, had treated me also. They immediately formed a bond:  Megan trusted her and could be herself.  Four different concoctions went into her veins and I felt a sense of relief that the cancer would soon be under attack, finally.

On the way home, it was one of the few times that Megs opened up and asked me what would happen next. How did chemo make me feel?  I explained that her chemo was different to mine as the Doc had said, but I tried to prepare her.  I told her that firstly, the nausea would strike. Then she might literally feel coldness in her veins as though the chemo was creeping through every part of her body.  Finally, the tiredness would hit like a sledgehammer, knocking her out.

I didn’t tell her about the mouth ulcers, or the constipation which feels like you’re giving birth to an elephant, or how it affects your teeth. Neither did I remind her how chemo made me feel as drunk as a skunk and give you total amnesia of some memories and events for years after.  What I did tell her was after it is all over, she will feel invincible, as though she could conquer the world single-handedly: that was what I wanted her to clutch onto. If anything, I needed her to remember that.

The following day, having vomited and lurched from kitchen chair to sofa like a drunken sailor, Megan collapsed in my arms, defeated and distressed: “I can’t do this. This is only the first chemo and I feel so sick.”  I remember telling her that she could do it, she had no choice and that it would get easier.  This was a means to an end. She couldn’t lose sight of that.

She never complained again, not once from start to finish.

The District Nurses came every week to flush her pick-line and take bloods. They soon became familiar with me answering the door and having to scrape Megan out of bed to see them. They were fantastic.

During one of the very first chemo’s, she fainted whilst the pick-line was being flushed. We caught her just in time and placed her on her back. Rosé wasn’t to blame this time! When she came round, she felt sick again so I just grabbed the nearest  bowl from the nearest cupboard for her to vomit in which happened to be the glass cake-mixing bowl; in she fainted, head-first, cracking her head on the side like an egg! It is little anecdotes, snippets like this which make us laugh.   We laugh a lot and we’re always being silly. If you don’t laugh when going through chemo, it will swallow you up like a black hole.

Barely a month into her first round of chemo, Megs was fundraising for Ward Alaw: it gave her focus.

She was not speaking to anyone about her illness and I was so afraid for her because she was keeping all this anguish and fear inside. She wasn’t allowing herself the chance to vent or be angry or sad; I encouraged her to start a diary to help process everything in her head. Instead, Megs said she would write a Blog to help others. It is the therapy she needed. She was astounded to find that she had 50,000 hits worldwide and it gave her such a boost: she could not believe that people were interested in her story.

This was a pivotal moment: from here on, I sensed a huge change in her attitude. She was strong.

 

Hair loss – The Lowest Point

DO NOT tell a cancer patient that ‘your hair will always grow back’ when they are faced with losing or shaving it. Go on then, you go ahead and shave your hair if it’s that easy!

When I lost my hair through cancer… and my eyebrows …and my eyelashes – I’d look in the mirror and think, who am I now? I am invisible:  a blank canvass. How do you turn such a traumatic thing into something less fearful for an eighteen year old girl?

With luck – Megs was referred to the Little Princess Trust via CLIC Sargent, who’s Cancer Support Worker visits to advise – and things looked a little less frightful.  I will forever be in their debt for their support.

Initially, Megan was allotted an appointment with the ‘Wig Lady’ as we called her, at Ysbyty Gwynedd. Three days post your first chemo is not a good time to go wig shopping: there was more life in a dead kipper!  Megs was leaning forward, wrapped around the arm of the chair in the corridor of the busy waiting room, green at the gills, drunk on chemo, sick-bowl in hand.  When she looked through the wig catalogue there was not a single curly haired wig, and no pictures of teenagers or young adults: it was like a slap across the face. We both came away feeling utterly deflated. What should have been something to make things appear a little brighter, made us lose faith completely.

Luckily, we bumped into her Consultant in the corridor and immediately, she went about contacting CLIC Sargent to come and advise us at home – que the Little Princess Trust.  This charity prepares ‘real hair’ wigs for children and teenagers up to 21 years old. Over the coming weeks 4 of her closest friends donated their hair to the Little Princess Trust. This display of moral support was touching and priceless.

Megan was adamant that her hair was made of sturdy stuff and would not yield easily. And she was right. Although strands came out continuously, it thinned at a reasonable pace, one which helped her accept and cope.  When I was going through chemo, my first big strand of hair literally broke off and fell into the gravy of my Sunday Lunch! I was mortified. I tried to laugh, but the giggles turned to tears. Megan was lucky in the sense that she was the one to decide when her hair would come off.

It was losing my hair which freaked Megan out most when I had breast cancer. She was 12 years old at the time and was scared that people would laugh at her bald mother. Someone told me about a ‘cold cap’ which is like an astronauts helmet which plunges your head into minus 7 degrees of ice to protect the fair follicles from the chemo. To avoid distressing Megs out further, I subjected myself to becoming a human lollipop. It was the most painful thing ever, like having a 20 minute brain freeze at the beginning of the treatment and emerging at the end like a snowman, hair frozen solid. Admittedly, it did maintain a lot of hair, though I resembled Friar Tuck! I endured this for 5 chemo’s until the migraines became unbearable and I gave up on the last one.  But by this time Megan was more prepared for my hair loss: it was the right time to concede.

This was the only time I pulled rank on her after her diagnosis. No-way was I letting her endure the painful lollipop head treatment; she would just have to accept the hair-loss.

For weeks I tried to persuade her to cut her hair shorter but no, she would not budge an inch: she wasn’t giving in.  She wanted her to be in control and I was glad.  Megs would pile her hair on top of her head to cover the bald patches until the bun became smaller and thinner, until it was merely a pimple of fluff.  It was like having a dog in the house:  her hair was everywhere. Changing the bed sheets became a regular ritual. Hair clogged the tumble dryer. It turned up in the fridge. It hung like cobwebs in doorways.

Then one Sunday evening she gave in.

It was sheer agony for her. Several times she sat in the chair only to get up abruptly, exclaiming “I can’t do it.”

I told her that she didn’t have to, if the time didn’t feel right: “Your hair isn’t what makes you you, that comes from within” I said trying to console.  I even offered to have my own head shaved first and I would have done it, but she would not let me go through that again.

Then, she was ready. I hacked away at the dead hair – the scissors grinding against the roughness of the follicles and then Osian, her boyfriend got the shaver. I was kneeling on the floor before her holding both her hands as he gently and carefully shaved her head. This was one of the lowest points of her illness for me. I could feel the anguish travel from her body and into mine like high voltage electricity, turning every nerve inside out.

She wept the whole way through.

I wished that it could be me not her going through this, she was only eighteen years old. I wanted so badly to take away her pain.

As I brushed the dead hair off the floor and sent her upstairs to wash away the stray hairs, Osian and I looked at each other, relieved that it was over and immensely proud of her.

Down she came. Wig on.  Smile on.  Megs back on track.

Brave. Inspirational.  Beautiful.

 

Blink! Blink!

A further two cycles of chemo, Megan had a PET scan at Christies again to assess if the tumours were responding to the treatment. It was the 28th of September.  Today was Megan’s grandfather’s 80th. Surely this was a good omen and would hopefully bring us luck.

It was a long, long week waiting for the results. My house was the cleanest it had ever been! Cancer had turned me into a domestic goddess for only the second time in my life.

On Friday, we went to Ysbyty Gwynedd for chemo and the results. If the results were bad, that is, Megan was not responding to the chemo, then the chemo would be changed to a stronger dosage.  A different chemo would mean different side effects.  We wanted to stay on the current chemo because we were in a familiar routine and hard as it was, my mindset was that it would be easier to cope with a familiar evil.

Agonisingly, we waited for over an hour in the waiting room. Dr S. called us in; “Smile, it’s good news: the tumours are shrinking.”  I sighed a huge sigh of relief.

Megs returns into her bubble. I didn’t know whether she was even listening. I expected tears of joy, a smile, a hooray… something.

The Doc couldn’t find the lab report: I needed to see it!  I needed proof.  But it is somewhere, unavailable.  This made me cross – as silly as it may have seemed, I needed confirmation that there wasn’t a mistake. I needed to see it with my own eyes. I think Megs was in sheer shock.  There was no emotion, no reaction, no soul. The Doc and I make eye-contact and I mouth the words “she’s not ok.” The Doc asked me to leave the room.  I want to be there, help her, hug her. I wished she was seventeen.

I stood in the corridor of a bustling Alaw Ward, my bottom lip trembling. I had to keep it together. We had just received the best news possible: the tumours were fading – so why did I feel so awful?

It felt like ages before the Doc came looking for me, and my eyes filled with tears and the damn cracked, threatening to burst and unleash a deluge.

“Blink! Blink!” she ordered.

Was I not allowed to cry? I wanted to bawl my eyes out but was told instead, to stay in control. The Doc tells me that Megan had expected bad news and that’s why she was frozen solid in the consulting room. She hadn’t dared to think it was going to be good news.

I went back and tried to put my arm around her but she shook me off as though she was swatting a wasp away. I realised then, that perhaps the only way for her to keep it together was if she locked herself away in the bubble. It was her way of coping.

When she was settled on the bed, I headed to the pharmacy to get her drugs and to the car-park to phone her dad and other family members to inform them of the good news. I reminded myself that it was good news, even though I felt as though I was walking on the gallows.

I must have looked like a lunatic waiving my mobile phone above my head searching for a blasted signal to make these phone-calls and the tears were streaming down my cheeks. I couldn’t ‘blink’ any longer.

Upon my return, Megan was cold and distant again: I assumed, still in complete and utter shock. I rummaged in my bag, eventually digging out my sunglasses, so I sat next to her bed hiding my tears from my daughter and the world – I must have looked like a mad woman wearing sunglasses inside, in the middle of the afternoon. But I really didn’t care what anyone thought.

It was a bittersweet, strange feeling. So lonely.  The tumours were shrinking but it felt like we had gotten the opposite news.  I wanted to shake her, pop that bubble, hug and kiss her and celebrate, but instead I had to just “blink, blink.”

 

 

Side effects and Cycles

My daughter has been transformed into a caterpillar since the start of chemotherapy! Once the nausea wears off, there is no stopping her: Popcorn, cherry tomatoes and ice cream… But this is not merely comfort eating. The steroids control her body like a poltergeist! The three stone weight-loss through lymphoma has been reversed.

Because Megan was collapsing in the first days of each chemo, when she eventually got out of bed, the Consultant suggested that she ate Nutella with breadsticks to give her energy and sugar to help steady her. So began the ritual: I’d take the Nutella breakfast and concoction of pills up to her bed every morning so that she could munch on them to give her the energy to get up.

I hate the first week of each chemo. I feel as though I am back on that roller-coaster ride again.

Megan and I are so alike that we mould into one another: I feel what she feels. And so her lows became my lows. Her highs were my highs. It is this perpetual emotional swinging which drains you the most.

During the first week of every chemo, she could barely manage a few words, most often they were “leave me alone.” I’d open the bedroom door with the caution of a postman who knows a Rottweiler is lurking! Sometimes I’d just stand in the door quietly watching her sleeping like you do a baby, anxiously looking for signs of breathing.  She says she’s going to burn her bed-linen and duvet when this is all over!  I will gladly hand her the match.

It is the tiredness that is utterly relentless. It weighs on her like a huge stone. The life ebbs out of her: her personality vanishes. The hand-full that she is, is nowhere to be seen.

And then, into her second week she comes out of her bedroom cocoon and transforms into a hyperactive puppy which naps all day! The sun shines in our house again.

However not everything about the treatment is bad. For the first time Megan has a bosom she is happy with. Steroids may turn you into a human hover but it gives you boobs!  Happy days!  We will no longer lurk in the shadows of Marks and Spencer’s looking for an A cup but will stride to the B cup section with pride.

Side effects are debilitating but Megan knows it is a means to an end and just gets on with dealing with it in her own way. Do not for one second pity her, because that is a negative. I hate the word “bechod!” (poor her).     The glass is always half full, not half empty.  At the end of chemo she has to have another PET scan to determine whether the cancer has gone in full.  If a little remains, then the chemo will continue – but this is not an option: she has plans!

 

An end in sight!

She had the last chemo but one on Christmas Eve.  Christmas involved a lot of anti-sickness pills to balance the Rosé!  She was determined to enjoy herself.

On Christmas morning Megan dropped an unexpected bombshell : “If I die, will you still  celebrate Christmas without me?”.

How do you give an answer to that?

She said: “You must always celebrate Christmas, no matter what, because I love Christmas. I’d want you to, no matter how sad you’d be.” She wasn’t trying to be morbid, just matter of fact.

We are immensely proud of her. I have never heard her complain, not once. Her strength gives everyone else strength.

It is hard to believe that a rogue gene after a bad case of glandular fever eighteen months prior to her diagnosis ignited her cancer.   I am filled with fear knowing that the cancer was growing inside her for so long.   So to any parent of a teenage child out there who has symptoms similar to Megs:     a persistent and maddening itchy rash, concentration problems,  reduced  appetite and unexplained and then drastic weight-loss, severe fatigue, unexplained rasping cough (you’ll know it’s not normal when you hear it), low mood and lack of zest and irritability (generally a lot of the normal teenage things ! ) – listen to your gut instinct and do not be put off.  You know your own child better than anyone.   These symptoms did not appear all at once, but slowly crept up, one by one.  I was Googling cancer websites desperately trying to match her symptoms weeks before her diagnosis, but didn’t think of, or know much about Lymphoma.

There have been days when I did not want to face the world. Sometimes when out shopping I’d want to be invisible: have a cancer-free day.  It is a double edged sword – touching when people stop and enquire about her, gutting when people pass by me, because they just don’t know what to say.   My best advice is – just be normal.  It is good to know that people care.

Our family and close friends have been tremendous.  And I will love Megan’s friends for ever, for the support they have shown. Megan may well have the cancer, but they are fighting it as well.  I have cried with them but I have laughed an awful lot more. It is her friends and her boyfriend that are getting her through this.  Her Whitehall ‘second family’ have been amazing too (you all know who you are ) – a mad bunch who have kept Megan sane!

I have nothing but gratitude and praise for all those involved in her care from Healthcare Assistants at Ward Alaw, nurses, district nurses, doctors and consultants and for the Reception Staff at our GP surgery for always slotting her in at short-notice. Thank you.

Everyone reacts differently when they are fighting a life-threatening illness.  We have been open and honest. We have kept it in mind that there are people out there who are fighting a greater battle. Some illnesses are forever.  Megan’s is for now. This cancer has a treatment and with treatment there is hope for recovery.

We are continuing to deal with cancer, the Megan Davies way: with attitude, laughter, anti-sickness tablets… and Rosé!

Caru chdi Megs, Mam xx

From a mother’s perspective

Before Christmas Megan asked me if I would write a blog for her website Mwgsi.com giving my perspective on her illness. I wasn’t sure if I could: it has been hard for me reading her blog.  Does she really want to know what it’s been like for me as a mother?  I asked a few trusted people what they thought of the idea and they all said I must do it.  So I started writing and found I could not stop!  “I only wanted a line!” Megs said.  But how can I summarize the last few months into a line, not even a paragraph would cover it.  So, the next few posts are my experiences of this ‘pause’ button on her life.  I hope that it is informative, light hearted where possible, and will help someone else who’s child is affected by cancer because as Megs says we are not alone in going through something like this.

Like Megan has, I’m telling it like it is . . .

June 29 – The Worst Day Ever

“Mam, please answer the phone!!”

These words turned my life upside down. My little girl found out that she had a mass, a lump.  And I wasn’t there.  That guilt ate at me like gangrene in a wound; it still haunts me when I try to sleep.  Whilst I was caring and nurturing other people’s children – one of my own suffered immeasurable pain.  I was not there when she received the x-ray results which started us all on this path.  For all the appointments I’d arranged and bullied her to attend over the last few months – a reluctant, petulant, Miss Independent, ‘don’t make a fuss’ teenager – I missed the BIG ONE!  No-one said to bring anyone with her and I just didn’t think. I had a class of 41 so I just couldn’t expect them to do without me.  So I let her walk into view of the cancer sniper – completely and utterly, alone.

It was an outer body experience.  I remained calm. I remained in control.  Too calm.  Too in control.

We went back to the surgery and I asked the doctor the necessary questions.

Attack. Attack. Attack.

I had this covered. I was even calm enough to ask about egg freezing.  There was no way that anything bad was going to happen to my little girl.  I wouldn’t let it.

It was so bizarre. Six years ago this was me,  – learning that I had breast cancer, the doctor’s knee touching my knee as he drew his chair in close to tell me, Breast  Care Nurse hovering like a bodyguard, just waiting to catch me when that bullet hit!  But I was an adult.  Megan was just eighteen, on the cusp of her life.

Last summer it was my sister’s fight with breast cancer which shattered my parents’ life again. Ten years ago my dad had prostate cancer and many years earlier his sister, my aunt, died an early death from ovarian cancer. Now it was Megan’s turn.

Cancer keeps knocking at our house and I didn’t want to open that door again.

Giving bad news to others is worse than hearing it yourself. Megan’s grandmother was reading her newspaper in the garden.  I drove up the drive. I should have been at school: she knew something was up. She could smell the bad breath of terrible news before I opened my mouth.  Leaving Megan in her grandmother’s arms I moved on to my next unsuspecting victim with the terrible news  –  her grandfather.

He crumbled. “Why can’t it be me?”

“Because dad, life doesn’t work like that.”

On we went, leaving a trail of fear and uncertainty and tears in our wake, to tell Megan’s other grandmother.

Megan’s brother just didn’t see it coming. Slumped on the sofa, still recovering from GCSE exam stress, catching up on series link TV, I sat beside him whilst Megan waited in the hall, hovering, listening in. He didn’t flinch when I came in, didn’t wonder or question why I was home mid morning on a school-day. He was totally oblivious.

“Your sister has had some bad news. She has lymphoma.”  I have to use the C-word to explain.  And then she rushed in like a tsunami, collapsing on him.  And they were hugging and crying and hugging and crying .  And still I was in control. I was numb.

I had to be strong.

I had to tell her father, who should have been first on the list. I wanted to tell him in person but he was away in Scotland with work and Megs said “I want you to ring dad – I want him to know now. I want him to come home. ”

It was the cruellest of phone-calls.

It was hours before he reached us. A tortuous journey.  He burst through the front door and I was there to meet him as he fell into my arms, sobbing, his whole body shaking.  I had never seen him cry like that before.

And still, I was in control.

Tears did not find me until I was lying in bed that night, but they were silent tears, big, wet, rolling down the cheeks and soaking the pillow tears; my body heaving with a terrible sense of foreboding. When sleep finally came through exhaustion, I dreamt of her funeral. It was vivid. It became a recurring nightmare for weeks after. The same dream: I am standing in the pulpit looking down on her coffin, giving a eulogy – all the funny bits a mum and dad stores for a daughter’s wedding day. This picture poisoning my head would not leave me alone. And the guilt, the guilt that she was alone when she heard.

Even the morning after, I remained calm. The world went silent in my ears like the aftermath of a huge bomb and your ears are damaged, muffled. I sat in the living room listening to the silence and felt overwhelmingly tired.

The door rang. Megan’s ‘Malia’ friends, as I call them, began arriving.  I open the door and they cried and hugged me in the hallway.  I comforted them.  Elin, Nel, Megs and I sat in the living room and we were calm and normal.

They didn’t want to go on holiday to Malia at the end of the week. “I understand how you feel about this, but you must go.  Megan wants you to carry on.  She can claim her money back on insurance but you can’t.”

“We don’t care.”

“If you want to help you must go away, have a good time and bring back all your crazy stories to entertain us. You’ve worked so hard doing your A-levels so you deserve to go and have fun.”

The three of them lied on the sofa entwined around each other, twisted like thick rope. And this is how the following months shall be – the strength they give her – all knotted together in this diagnosis of hers. I knew that they would be there for her.

I was so surprised at how well Megan took the first set-back. On the way back to the doctor’s the previous day she said “Ask the doctor if I can still go to Malia.” I replied, “if there is any way, any way at all that we can get you to go on holiday, we will.”

I knew this was not going to happen. But she needed some hope and I was not going to shatter that as well.  The fact that the GP had given her the probable diagnosis of lymphoma spoke volumes to me: GP’s just don’t give diagnoses like that unless they are pretty sure of their facts because she hadn’t even been to see a Specialist yet.

“Just ask if I can go to Malia…”

“I’m sorry but you can’t, you are too ill,” says the Doctor. And so with that, the case was closed.

She did not complain or argue once. She accepted that her path was the C-Road.

It was a bizarre day. More of the Malia girls arrived, filling the room with tears and laughter and cups of tea. One of the girls had thrush: it was hilarious. She refused to see the doctor to “show him my bits – no way!” and we talked about the various old, traditional ways of treating it and tried to make her see sense.  But no.  She had thrush and thrush was going with her to Malia! It was the light distraction we needed: “You might have cancer Megs, but my situation is way worse.”

This was how it would be. They treated her as they would normally and joke and spite as usual.  No molly coddling. It was exactly as it should be.

By mid afternoon all seven Malia girls were on the patio. Heaven knows what the neighbours thought of the noise, laughter, chatter and loudness of this lot. Megan had cancer and it sounded like there was a party in the garden… in between long, heavy silences.

“Can I borrow your new dress and your new shorts Megs?”

Ouch! These girls were ruthless! But Megs had already offered her new holiday wardrobe: “My clothes might as well go to Malia even if I’m not.”

It pained me, but I was so immensely proud of her: she was calm and strong and selfless. Up they went to paw through her not even worn yet holiday purchases. And I loved her even more.

 

Meeting the Consultant: Megan meets her match

Dr S. spoke to Megan directly to explain her diagnosis. I liked her no-nonsense approach: Megan could not be defiant.  It would be far easier if she were seventeen – but she is eighteen, legally, ‘an adult’ and with this comes all the burdens of being treated like an adult. But the girl sitting beside me that day, in her bubble, was not an adult; instead she was a small child again – being thrust with mammoth-like adult responsibilities of choices and treatments and decisions.  All being eighteen should mean at this stage in her life, is being allowed to order an alcoholic drink in the pub.  She shouldn’t have to discuss biopsies and where to have chemo and do you understand what’s going to happen now questions. Graham and I were on the outside looking in: we had no idea what was actually going on inside her head, she remained in her impenetrable bubble.

I was the parent from hell! I had my notebook with me to write everything down and I think the Doc found this annoying.

I asked endless questions: I’d done my research.

Tell us everything! I’d been here before and was fully aware that the brain plays tricks in consultations and you go home, forgetting all the details.  Although I wanted to run head-on at this raging bull of lymphoma, I had to hold back because Megan couldn’t take it all in.  She had already retreated into this bubble, keeping her away from me.  But we are in parallel bubbles, Megan in her steel encased, impenetrable bubble: ours is flimsy and easily broken.  Our feet will not touch the ground for many weeks to come.

Even at this early stage, the Doc thought it was Hodgkin’s Lymphoma from all the symptoms, but only a biopsy could prove which one.  And so, the agony of waiting began.

Just because I’ve had cancer– does not for one second make any of it easier for me, her or us. I wanted to tell people to stop saying how helpful I could be:  I could and can only be of help if she asks.

Megan didn’t ask; didn’t want to know. Not yet anyway.  She was tucked away in her bubble in a complete emotional shutdown.  I didn’t have access.  She wouldn’t let me take away the venom of it all.  She wouldn’t even let me hug her.  I was a stranger.  How could I numb the pain of the car crash her life has become?  She is stuck on this cruel conveyor-belt: Oh just cancel the post A-level holiday to Malia Megs, forget about camping in Builth, drop any idea of going to Uni in September, oh and by the way – do you want children? –‘ cos you’ll probably never be able to have them now. Oh and that hair on your head – that’s gonna fall off as well!  Enjoy your summer as a carefree eighteen year old on the cusp of what life has to offer!

This was the horrific reality of how life can change in an instant.

The wheels were set in motion and we arranged appointments with hospital after hospital after hospital: a biopsy at the Liverpool Heart and Lung Hospital, an PET scan at Christie, Manchester, IVF referral to St Mary’s Manchester and another scan at Bangor. I was simultaneously grateful and astonished at the speed at which everything was happening. The message was simple: no time at all to waste because this is serious.

A phone-call one afternoon from the Doc after the initial scan was soul destroying. She says that the primary results reveal that she doesn’t think there is time to go for IVF but we should still go to the appointment to discuss the matter. What for? Why? Just to dangle a carrot and whip it away in a cruel instant.

The situation was urgent.

The lung which Megs refers to as being a ‘fruit-basket’ was being attacked by a mass the size of a melon, and to our horror, the tumour had spread to the windpipe and trunk of the neck. Couldn’t we PLEASE fast forward to chemo?  I wanted this gone.  It was antagonising, impossibly hard to accept that the tumours couldn’t be taken out in an operation like my breast tumour was; instead they had to be shrunk away.

 

Hospital appointments and Rebellion

The biopsy came first. Megan loved the Liverpudlian accent of the nurses,  – and I was immensely glad for their humour and banter. The Sister who booked her in made a particular impression and Megan says after that she’s the kind of nurse she would like to be one day: warm, compassionate and caring.

The night she is admitted and settled in, Graham and I went to a restaurant and sat opposite each other, a heavy, dense silence pressing on us. There was nothing to say: we could only worry.  The waitress thought our awkward silence was down to first date nerves and tried to get us warmed up by pushing the wine list on us with a wink. If only! The food stuck in our throat.

The initial IVF consultation was one of the most traumatic days. Megan didn’t have a clue why she was there: she was in shut-down mode, again.  The Consultant read out part of the referral letter from Bangor and said because of the “advanced stage cancer” that Megs could start IVF treatment that very day.

Hold-on! No-one had used the word “advanced” before now and it hit us like a truck.  Megs nearly bolted out the door on more than one occasion and went into ‘Perry’ mode with rude “whatever” comments.  Beam me up Scotty!  I wanted to be somewhere else too. Any-where but the here and now.  I knew how much she wants to be a mum one day so it is important that she thinks long and hard before deciding if IVF is for her; if in the process I was the target of her tongue, her anger and frustration, then I gladly accepted it because it meant she was thinking about her future.   Initially she said “what’s the point going through this, I’m not going to be here for long anyway.”

Gulp.

We forced her to talk to a counsellor before making her decision. A professional: someone from outside the bubble.  Not her mum and dad.  Whilst she was there, I was weeping in the foyer. Graham rang the Consultant in Bangor, asking whether there was realistically, time to proceed.   She said that the biopsy results were not yet back but that they knew the tumours had been there “a long time.” Because they couldn’t tailor her exact chemo without the biopsy results we had a window of opportunity for the IVF, Megan willing.

We headed to a coffee shop down the road – neutral territory – to discuss it using the excuse that dad ‘needed a coffee and a rest before the long journey home.’ Everything I said made her cross, unresponsive and cold. Her dad – somehow found the right words, found the wisdom to make her weigh up the decision and think beyond the cancer, beyond the fear, to her future.  And so, back to the hospital we trudged: to proceed.

It seems ironic that the nurse who took charge of procedures that day was heavily pregnant. She was gentle, softly spoken, kind and patient: an absolute angel.  She carefully went through the details and there were so many forms to fill in, but I wasn’t entirely sure whether Megan was really listening. She signed on all the correct dotted lines. But she’d probably have signed anything, just to get away. I was desperate to know what was going through her head. Just a peek or the tiniest insight would have been enough.  The tension in the room was prickly.

She shouldn’t have been there. At eighteen, she should be hung-over in bed after being out with friends, not listening to how she has to drink plenty of water, rest, inject hormones within the exact time frame it should be taken. Teenagers don’t drink water, they don’t rest, they don’t follow time. Teenagers and hormones don’t mix!

Megan was sent for a scan and when her father and I saw the queue in the waiting room we both looked at each other and thought – she’s going to bolt again! But she was pushed to the very front of the queue, as though she were the Queen. We were relieved and grateful: everyone was so kind and understanding.

We had to attend the clinic every other day for 7 a.m appointments: we were all exhausted. Sitting in the waiting room, we must have stood out like sore thumbs.

I whispered to Graham “we must look like the old would-be parents sitting with our surrogate!”

Megan looked blank, void, expression-less but I can sense the knot in her stomach. We don’t speak, though God knows what there was to say anyway.  We were there because Megs deserved the chance, at the very least a chance, to be a mother one day.

Once home Megs insisted that she was going to Builth Royal Agricultural Show and will be camping, NO MATTER WHAT. It was a complete nightmare. The rebellion against the cancer had officially begun.  We told her the choice was getting legless in Builth for a few days or going through IVF and having a chance of motherhood if the cancer makes her infertile. She couldn’t think straight. She just wanted to be ‘normal’ like her friends.  I phoned her nurse in St Mary’s, begging her to allow Megs to have just two nights away to be a ‘normal’ teenager:  It all depended on the lab report on her hormone levels.  She called back the next day to let us know that the test results were favourable so that she could skip one appointment but only, only if, she took care of herself, injecting the hormones on time, drank plenty of water and ensured she remained well-rested…! How on earth was that meant to work?

I packed both my children off to Builth. My daughter had a tumour that was pressing on her windpipe, IVF drugs packed in a cool-box with the Rosé and beer!  You couldn’t make this up if you tried. My son had just had a second complex tendon graft operation on his hand and was mummified in thick bandages, under strict warning that if he falls or straightens his arms, he will do further damage.  Was I absolutely mad letting them both go? Probably… but they needed to escape.

So off they went to Builth and had their ‘time out’ from cancer, whilst I drove myself up the walls at home!

Luckily, their short respite went without trouble and so we resumed with the IVF. On the fifteenth day, off we went to St Mary’s for the egg extraction. The mood was sombre.  Megan’s biopsy wound was infected and had opened , her breathing was laboured.  She was prickly like a porcupine.

Because of my history of severe reaction to anaesthetic, she had to have the procedure in the main hospital rather than the warm and friendly IVF clinic. But anaesthetic is totally out of the question mainly because the tumour on the windpipe makes it far too dangerous.  Only a spinal block is possible.

I will never forget the warmth in the Doctor’s words as she led Megan to theatre: “We all know about her situation and we are going to take the very best care of your daughter, I promise. We won’t let anything happen to her.”  She just knew exactly what I was thinking.

It is hours before it is over. An IVF nurse came looking for us in the waiting room and I nearly jumped on her – her face was so concerned and grave, I thought she had come to tell me that Megan was dead, suffocated by the tumour.  But kindly, she’d just come to sit with us.

Fourteen eggs later, we were relieved and Megan’s zest for life reappears: “I’m going to have 14 children!” she exclaimed.

Her legs were numb from the spinal block and she wasn’t allowed home until the feeling in her legs returned and she had a wee. So the nurse and I lifted her on and off, on and off the commode, each time a false alarm until she finally wet the bed… and we could go home: IVF was over, now it was time for chemo. . .

Blogging

 

The last six months has been crazy in every way imaginable.

I knew this was going to be the toughest time of my life so far, and I knew right from the off that I wanted to document the entire ‘journey’. Someone suggested keeping a diary so I have been taking photos along the way – but I also wanted to be able to remember exactly how I felt at the time. I wanted to read my story back, and be proud of myself, my family and my friends for coming out the other side.

To me, writing my experiences down was cathartic and gave me a huge sense of relief. Lots of people ask if I get upset reliving the period I got diagnosed, but I feel that writing everything down is a huge weight off my shoulders; the chance to box up the feelings, the emotions and move onto the next hurdle.

I wanted my blog to be honest, often brutally honest, expressing exactly how I felt at the time. My main aim was to help others, but I wanted it to be enjoyable and light-hearted at the same time because as depressing as the topic is, it hasn’t all been doom and gloom.

Some days I would start to write, and complete crappy, unpublishable words would appear on the screen. I wrote my first blog post and it was about seven pages long, and with the help of my editor, we managed to cut it down to four different posts with catchy titles.

For a while I was nervous about putting my story live for the whole world to see, but with some convincing, one Wednesday night I forgot about what people thought, and made my first blog post live. Initially, I wasn’t going to share it on social media, as I didn’t want people to think I was attention seeking; the whole point of it was to help others, I was just going to wait for my blog to be noticed.

But, I was persuaded to share my blog on social media by friends, and with their help and the power of the internet – I had over 10,000 views in under 3 hours. I couldn’t believe it and just couldn’t make sense of it. My phone was going crazy with alerts and messages from people sharing the blog or saying how much they had enjoyed the first post. People were saying how inspiring I was, others didn’t realise I had been so ill. I felt instant relief that it wasn’t a total flop and that people had actually enjoyed reading it: I was totally overwhelmed.

Ever since that first night, people have been continually supportive about the blog. People come up to me on the street to tell me they’ve read the blog. I notice people staring at me when I’m out. The writing itself has been hugely rewarding but I never anticipated the kind words of others – the encouragement of (quite often) strangers, gave me an immense boost and the strength to continue.

After a couple of weeks, the (Welsh) media had heard of my blog and I was receiving emails galore asking for phone, radio, magazine and newspaper interviews. Ever since the first email, my story has appeared in local and national magazines and newspapers and I have even been on the radio, where I forced my friends to come too – naturally it was hilarious and we spoke more about eating cakes than cancer.

However, I decided that if I was to feature in any form of media, it would be on my own terms – to advertise the blog or the Little Princess Trust and raise awareness of Lymphoma. Most of all though, I wanted my story and voice to be heard in order to help any other person going through the same as me, to give them a boost, hope and the confidence to go on.