Melody Berthoud
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The 7 stages of relief

Melody Berthoud
Posted by
15 Apr 2016

Realising that there are stages to recovery at the end of treatment has helped me to understand my thoughts and feelings and how it will take time to feel 'normal' again.

Before we ended treatment I wondered what life would be like when it was all over.

Cancer defined me

For three years or more now so

Who will I be next?

People asked me all the time how Andrew was feeling about approaching the end.  I asked him one day at dinner. The truth is he was diagnosed at 3 years and 5 months and the end was 3 years and 4 months later. That was half his life on treatment. He has no memories of life without cancer, hospitals and medicine. To put things into context, I am 39, so it would be the same as me having had cancer treatment for the last 19 and a half years.

So to answer the question he talked about what he was going to be losing; not seeing the nurses, not collecting beads of courage, not being able to park nearby using the blue badge or not visiting the hospital to play with the toys.

The two things he was excited about were going on a plane and being able to run faster!

People asked me all the time if I was excited about the end of treatment.  "Of course" I would reply but it is also scary.  Now that the chemotherapy has stopped what about relapse?

I think there are 7 stages of relief:

Excitement – we counted down the days from 100, 50 and then, from 25 days, daily.  We shared our excitement on Facebook with everybody until we made it to the last day of treatment on Saturday 20th February 2016.  We had a small party for Andrew and I had planned a surprise trip to Disneyland Paris for the children.  It gave us a happy focus for the end.  We were excited – right let’s go and get on with the rest of our lives!

Shock – but then came the shock. After the party has ended you don’t feel excited anymore.  In fact things feel a little more scary because you don’t know what the blood results are each week, you haven’t got an appointment for 6 weeks and it does feel like you have lost a huge part of your life. Is it really all over?

Guilt - Then I felt guilt – I should be happy come on snap out of it – it has all ended woohoo! Stop worrying about relapse and get on with things. Guilt gnaws away inside, every sneeze and cough or bruise makes you panic.  If he sleeps for too long I worry and if he wakes early I worry too.  EVERYTHING worries me and I feel guilty because I should be happy! Then there is all the things we haven’t been able to do for the last 3 years that we could be doing now, painting the house, seeing far away friends.  But I am so exhausted I just want to be for a bit.

Anger -  Why him? Why us? I started again to look for the reasons for Andrew getting cancer.  Surely there must be a reason that Andrew got cancer? That it was destined in the stars for him to make a difference somehow? Or maybe not.  Maybe no good will come out of his cancer. Maybe there is no greater meaning other than to be a statistic on a page. I don’t want Andrew to become just another number reported in board meetings.

Reflection – What good has come out of our experience? Because of Andrew the support given in Bromley and Croydon for families with a child diagnosed with cancer is better than it was.  The facilities at the Queen Elizabeth Hospital, in Woolwich are forever improved more than anyone imagined possible for families in Bexley, Greenwich and Bromley. Through Andrew we have raised awareness of the signs, symptoms and treatments for child cancer, he has raised money to keep cancer research going and more people are giving blood in his honour.

This is the stage I am currently in – reflecting and writing blogs.  I am thinking long and hard about our journey and how it could help others. To give it a reason.  I am looking to get the journey published into a book

The upward turn - Just as we adjusted to a ‘new normal’ after diagnosis – we will adjust again to this ‘new normal’.  There will be a time when Andrew ‘had’ cancer and it was something in our past not present. We will celebrate our anniversary of EOT rather than our anniversary of diagnosis and move on.

Acceptance 

When you come out of the storm

you won’t be the same person who walked in –

that is what the storm is all about

Given the pain, trauma and heart break we have all experienced, we will process it and be ready to move on and make plans for the future.  I will be able to say to Andrew ‘when you are 18 year old and leaving home’ without thinking (I hope) in my head. It will become another anecdote to share at a dinner party.  We will say

He had cancer but look at him now.