And so we did what we do best; We loved, we laughed and we smiled.

And so we did what we do best; We loved, we laughed and we smiled.

That first week on Piam Brown was a blur of sterility, procedures and pain.

During those first few days, Felix endured countless interactions with strangers, procedures that hurt so much that he cried in pain and a tirade of emotions that he could not recognise, let alone explain.  Until this moment he had never really experienced true physical pain or fear or lack of control or a complete sense of being overwhelmed and scared.  We hadn’t.  For the first time in my life, I can categorically say that I felt what fear and panic were in their truest form.  Felix had never experienced these feelings before so he couldn’t tell us how he felt.  His lack of comprehension and words meant that he just became quiet and sad.  The nurses, doctors and housekeeping staff were amazing and did all they could to keep him upbeat but Felix didn’t know them; he didn’t have a relationship with them and didn’t trust them.  We all did all that we could to reassure him and tell him that everything would be OK but every time we did, another examination or procedure would take place which upset him.  We had no idea what was happening or what would be happening next so it was difficult to prepare him.  It was heartbreaking.  The hardest thing for us, was to watch Felix go through something that was really tough and not be able to fix it for him.

During that first week he had numerous examinations including a lumbar puncture, x-rays, ultrasounds.  It was all so scary.  Felix was anaesthetised on two occasions for his lumbar puncture and then to have general surgery to have his portacath fitted. He had his first lot of IV chemotherapy, his first lot of steroids, his first lot of anti-sickness.  He had four hourly observations, he had to pee in a pot every time and now he had a titanium port fitted in his chest.  All of this in three days.  The week before he had been at school camp taking part in hikes and outdoor activities.  The week before he had trained with his football team.  It was surreal.

The rapid response to his diagnosis is a medical marvel in our eyes.  Whilst it gave us no time at all to psychologically prepare him, or the rest of Team Brown, for what was happening and the future that lay ahead, the medical care and attention he received from day 1 was phenomenal.  Would it had been different had we had more notice or time, I’m not sure.  Would it have stopped the endless tears during those first few days?  Probably not.  Would fear and anxiety run through every vein in our body?  Without a doubt.  Would the nurse had to have brought me a cup of tea and words of compassion at 3 o’clock in the morning?  I think she would.

During this time we still had to laugh and smile.  This was our son we were fighting for.  If we lost our humour, confidence and conviction, Felix would lose his.  We had to override these feelings of helplessness, fear and anxiety.  We had to take emotional control of the situation for the sake of all of us.  We only had one option.  We had to be us.  And so we did what we do best; We loved, we laughed and we smiled.


Piam Brown ward – Wednesday 3rd February 2016

  • Karen Roach
    Posted at 05:34h, 29 April Reply

    Perfectly wrote , it’s a minefield but as you say humour and being a family comes first . I remember Sam , who even at 17 had never had a blood test , didn’t know what a cannular was , and as you say everyday in the first few weeks a procedure would happen . , keep smiling xxx

  • Janet Ransom
    Posted at 08:37h, 29 April Reply

    Very movingly written, Kerry. I suppose it was important to get the treatment started even though some improvement on communication in advance might have helped.

    • The Diary of Mrs Brown
      Posted at 08:57h, 29 April Reply

      There is no criticism to be made of the support we had. It was purely because we were in the thick of it and it was a whole new world. They talked through it all with us and offered support no matter what time of day. Sometimes I just wonder if it different when you have a couple of weeks notice for example. Lots of love xx

    • Marie-Celine
      Posted at 08:53h, 01 May Reply

      Everything happened very quickly with us too, once we had a diagnosis. Getting the diagnosis the first time was a fight due to lack of awareness ?

  • Marie-Celine
    Posted at 08:51h, 01 May Reply

    We kept our humour too. You have to. My son actually had the best humour of all. But there were all the other emotions too, and often many emotions in the same day, same hour.

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