Thoughts and ramblings of a father, whose beautiful daughter has just been diagnosed with Hodgkin’s Lymphoma.

There is no order or editing, it’s just the chronology of thoughts and feelings that overwhelm the days and nights of this terrifying time.

Our Story

THE DIAGNOSIS

Nothing can prepare you, for when you are asked to move

to a side room from the main ward. The questions and confirmation of symptoms are asked quietly and calmly.

And then they mention Cancer.

Its both a terrifying yet clarifying word. It explains the past. The symptoms, worries, thoughts and feelings. There is almost a relief in the announcement as you have clarity in the fact that you were, indeed, not imagining things. The confirmation of your present existence.

Yet it opens the door to a world of unimaginable fear and unexpected futures.

The diagnosis of a particular type.

The possible treatment and projected outcomes.

The immediate freeze and end to your previous life and the commencement of turmoil, anxiety and a surreal journey.

THE NEXT STEPS

Tests, biopsies, scans, bloods, faces, wards, porters, nurses , doctors, consultants, roommates, bags, clothes, belongings,

beds, curtains, cards, messages, vending machines, cafes, lists, tables, food, drugs, monitors, Obs, monitors, drugs, tests, scans results, plans, faces, cleaners, nurses, wards, rooms,.............. home?

And the phone calls…. The many, many phone calls.

The whirlwind of change that engulfs your existence. You unconsciously follow the pathway defined and outlined by others.

Individuals you have known for an hour.

A well trodden path that you have no experience of.

Bracelet, monitor, bed, bathroom, drugs, obs, faces, questions, descriptions, prescriptions, buttons, nurses ……. Window.

How do you cope?

How do you escape?

What I did or felt, followed a chain of days, weeks, months parallel to the other life, the world outside the hospital.

How I coped beside my daughter and the rest of our family led me to this …… a stream of consciousness and often promptings from my wife and girls, who could see beyond the face I have hidden behind.
I guess for me it was about controlling one small thing, when our entire lives had been catapulted into constant uncertainty.

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YOU CAN NEVER HUG ENOUGH

From the moment of the diagnosis you need to hold on to something. So make sure you do that with everyone.

The messages of love and support mean so much,

but the physical contact is the key to coping with the tears and snotters!

Parties

The realisation that you should have had a party whenever you could have !

For everything and anything.

Sometimes its not about that exact moment…. But you can look back on it, when things are difficult and realise all the good bits and people that are in your life.

Helplessness

The feeling of helplessness is almost unbearable. So, hope and trust in those that can do something. It’s all you have sometimes, and all you can focus on. This is really difficult especially if you have had to fight to be heard about your symptoms.

Sleep

Sleep when you can.

Its not going to be restful but it means you can get up and

go again.

Invest in cucumber 😂

You’re gonna need it for the eyes!

Tell it straight.

There is no sugar coating. It’s preparation for a fight. Fore warned is fore armed.

Drink loads of fluids

Between the crying and random patterns of the day you need to be hydrated. Small bits often.

Express yourself.

That huge ball of difficult emotions has to go somewhere.

If you’re a talker, talk, if you’re a walker, walk.

I’m finding writing helpful cause it’s just me and those

many, many thoughts.

Asking for help

You can’t miracle this on your own and others will want to help. So let them. Even if it’s hard to do, to admit you need it.

Worries

Try and forget about the ‘what ifs’

It will come in waves and just hit you but you can only affect the here and now, so put all your energy into that.

Fatigue

Fatigue is your worst enemy.

Get up, get washed get changed and get going.

Mistakes

You’ll make stupid mistakes and say and do the wrong thing.

It can’t be helped. Your head is in a totally different world and it’s gonna happen. Don’t take it to heart and if others struggle with that …then it’s their problem.

Waiting

The waiting is the worst time.

There will be so many difficult moments that have not been faced yet, but the waiting for results and treatment plans saps soo much energy. Hang in there. Its a crucial part of the process.

Isolation

This is both a blessing and a curse. It allows time to process things and sort yourself. But is also leads to that wave of “what if’s” again. Focus on the next small step for that day.

Find some joy.

If its jokes or wind ups or stories then go for it. Our dark humour has definitely come to the fore. This is such a serious situation, that if it’s the only focus, then we will struggle even more.

Be mindful of your mood.

Try and identify when you’re angry and notice the change. This will hopefully allow you to express it in a different way and reset how you feel. (Not my strongest area!)

Take pictures!

My daughter is adamant that she wants to log the journey.

Family ones, visitor ones, selfies, daft ones.

The scars, the tears. The lot.

Loss of focus

Watching things loses its appeal, especially as you have no concentration (except reruns of Still Game!).

Music however takes on a different role. It can be overwhelming and all consuming or soothing and powerful. I find myself playing it full blast in the car to drown out the thoughts and it allows you the chance to scream! 😱

THE WAITING
Man the waiting is exhausting. How do you fill your time with something worthwhile, when your girl is waiting on some of the worst news of her life? I have no answer for this! It returns again and again over the appointments, tests and treatments. We just tried to find daft things to occupy our time.

The effect this has on the wider family and friends is huge.

Check in on each other when you can even if it just a brief

update.

The Power of others

Strength comes in so many ways. The positive messages, the check ins, food, the flowers and gifts. But it’s often just the

daft little moments that you can share that are the best. No words needed. Just a moment in time.

People often understandably don’t know what to say. That’s ok and you find yourself doing the talking. And so many want to help but sometimes that means just giving some space.

Mind over matter

Your head is so full and so empty at the same time. It’s crushing.

People amaze you. From the messages of friends or acquaintances lost in time or the random anonymous posts of complete strangers who want the best for you. Amazing.

Changed days

The ordinary life is difficult. Time has changed forever. However there is still that connection to your previous life. One which you must return to. Talk things through as to what is to follow. Begin to plan and see what will be expected of you. People truly understand the situation and talking about what you can or can't do clarifies things for everyone.

LOSS

There will be moments of loss. Loss of control. Loss of the familiar. Loss of direction and a plan for the future. Accept that there are areas that you cannot control no matter what. What do I need to do to get to tomorrow?

You want to scream and shout and wail…… you just

don't know what at!

You also can't help but see the loss and devastation

this disease inflicts on so many people and in

so many ways.

The closer to the end of treatment you get.. the harder the small things are. The hope, the worry, the insecurity for the future. It starts to consume you, as you stop focusing on the day to day and think beyond it. The “what ifs” that you said you wouldn’t think about are back.

THE STAFF

The Staff….. oh my god the Staff! People enter this profession for many reasons but they merge into one… they simply care.

The multitude of people, faces and jobs that simply mean one thing…. Hope.

From C onsultants, Haematologists, A dvanced Clinical Nurse specialist, Pharmacists, Doctors, Radiographers, A&E, Staff nurses, Nurses, Paramedics, Porters, Students, Cleaners, Catering staff, Beatson volunteers and anyone and I mean anyone you come across, just wants to care and help you through this.

Reflections on the past.

You begin to reflect on how you have handled things after a while. At the start you begin by looking at the floor…. When passing through carparks, corridors and wards. You don’t want to look anyone in the eye, because they will see right through you. They will see that you don’t know what to do. How to react. How you can possibly help. They will know you are on the edge.

You want to hide the tears but you don’t know how.

Then you get into a pattern. The names that were spoken for days before, you suddenly remember.

You learn by osmosis, the terms and rhythms of the day. You look up from the floor and say a simple hello. You see the everyday in everyone. You find the comfort of a simple nod from any of the staff, a recognition of what you are going through.

They understand. They have seen it many times before.

The weakness that you saw in yourself, is suddenly a right of passage.

You realise you are not the first and certainly not the last to experience this… this torment of what you have known before. The obliteration of the established norm.

AND IN THE DISTANCE……. THERE IS A BELL

Never sure if it signifies the all clear, or for whom it tolls. But it is undoubtedly the focus. The Holy Grail.

And you suddenly realise the time! Days, weeks and months have merged. The endless commuting and carparks

and corridors, have swallowed the hours leaving

fragments of memories. How many coffees?

How many different seats?

How many different rooms?

How many rides on a lift and the buttons pressed?

The counting of floors? The waiting on doors?

Looking for change

But the true experience of any loved one, is the all consuming scrutiny of change! How do they look today? What do their eyes tell me? What have they eaten? What is the blood count? Are they neutropenic. Have they had painkillers? Do they need more? Is there infection. What about antibiotics? When are the results back? What about a transfusion?

CAN THEY GET HOME???!!!!

The Disappointments

Then we are stung by another disappointment. A knock back. A blow to the positivity that you have built.

The results are not what you want or need to hear.

There is not a reduction. There is a glow on the scan. There is a fresh cancer. You need further treatment!

It’s a tangent of torment. An addition to the pain which sucks the confidence from your weary soul.

You now know the path that must be followed but are more fearful of its cost. You understand the price you must pay.

But you will step forward again. It will not prevail. For you have faced this beast before and you know it will not retreat without a fight. So you forge ahead!