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. . .

Advertisements

6 thoughts on “From a mother’s perspective

  1. Natalie mcdonnell says:

    Mae blogs Megs yn inspirational, dynas ifanc anhygoel o gryf, ac ei mam, dwi ddim yn son am hyn pam rwyf yn ei gweld ond mae fy meddylia efo chi bob tro rwyf yn darllen yr blogs anhygoel yma, mae be mae Megs yn gwneud er mwyn rhanu ei frofiadau yn anhygoel x

    Like

  2. Sylvia Davies says:

    Ellai ddim dychmygu pa mor anodd oedd rhoi hyn ar bapur er mwyn rhannu’r profiad erchyll ma! Dwin shwr bydd hyn yn help mawr I eraill fydd yn cychwyn ar hunllef tebgMeddwl amdano chi! Xxx

    Like

  3. Eryl says:

    Bethan – mae gynno ti nerth ryfeddol. Dw i heb dy weld ers blynyddoedd ac mae darllen y blog yma wedi dod â sawl deigryn i’m llygaid.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s