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

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One thought on “A mother’s perspective- Part Two

  1. Malcolm says:

    My very best wishes, and good luck. I have just has chemo 15. Total hours now 792.5. Mine however is Pancreatic Cancer, and the tumour has wrapped itself around the portal vein. It needs to come off before any surgical procedure can be undertaken.

    Like

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