Monday, 19 November 2012

What's the matter princess?

Diarmuid spent 6 nights in the hospice and, while he was there, we slept in the hospice with him. Just 24 hours before he was moved there from the hospital, we thought he was coming home and would start chemotherapy a couple of weeks later but instead he was moved to a hospice to die.

My two boys (15 and 17 at the time) knew everything that was going on. But we hadn't told our youngest yet that her Dad had cancer. His prognosis was two years so why would we tell her how serious his illness was at such an early stage? So when we got to the hospice one of the most pressing issues was the fact that Aisling didn't know how ill he truly was. The boys and I had only found out that morning that his time left was very short.

While they would normally break the news of cancer to young children over a period of weeks, Aisling would need to be told urgently.

A team consisting of a counsellor, two doctors, a nurse, a chaplain, myself, my sons and my brother Chris sat in a room to explain to Aisling what was happening. In retrospect this was the perfect combination of people. My children because, tragically, they needed to know the truth. The counsellor because she gets it. The medical experts to answer the questions and, sadly, transmit that this is science, it's about cancer cells, not some imaginary or half-arsed 'syndrome' but a real medical disease killing a real physical body. My brother because we are very close and he gets it too. He's not hysterical or dramatic. He's there because he cares.

The head doctor and the counsellor asked Aisling to describe what had happened to her Dad. She told them how a few weeks ago he wasn't feeling well and he had seen a doctor and was vomiting and sore. They listened and validated every word. Then they told her about cancer - how there are bad cancer cells and that even though it's often fixable, Diarmuid's particular type of cancer was very bad. They said (in such a kind and loving way) that they had done all they could but, at this point, there was no more could be done except to ease his pain.

Aisling just stared from them to me, to her brothers, to her uncle. She was mute. I could see the realisation slowly dawning. Her little face was full of desperation - she so badly wanted someone to say "BUT..." as in "but of course he'll be okay" or "but he'll go home soon"...... There was total silence in the room. Then she looked at me for an answer. I caught her hand and put my arm around her and I said "I think that even though the doctors have tried everything and even though Daddy got the best medicine there is..... well I think this means that Daddy is going to heaven". She went white and her innocent little face went to pieces and the tears poured out of her. Everybody cried - the nurse, doctors, counsellor, me, my ubrother, my sons, Aisling. The tears flowed freely. Everyone hugged her in turn including her big brothers. She urgently wanted to leave the room. She said: "We must tell my Nanas, we must tell everyone, they should know".

Across the hall there was a day room where my family and friends waited that whole week, taking turns to support us and to visit Diarmuid. At that moment Aisling ran into the day room with tears pouring down her face - she threw herself into the arms of her auntie and her grandmothers and said "my Daddy's going to heaven, my Daddy has to go to heaven" and then she sobbed and sobbed and we tried to catch her before she ran but she ran down the corridor to her Dad's room shouting "I have to see Daddy". Then she threw her arms around him and cried her heart out. Diarmuid gave her a big smile and said "hey, what's the matter princess?". She looked at me and looked back at him and instinctively knew that he didn't know he was dying. She didn't mention heaven. She just said "Daddy you have cancer". He said "yes but I'm fighting it princess". He still thought that chemotherapy would be happening. She hugged him tightly and let the tears flow. He looked at her and looked at me and I think in that moment he knew his life was ending.

Four days later Diarmuid passed away with Emmet holding his right hand and Daniel holding his left hand and me rushing into the room as he took his last breath. Within minutes of his dying Aisling came into the room (she had been out for a walk with her auntie, Diarmuid's sister) and I knelt down and told her "Daddy has gone to heaven my love". She cried and held him and, along with her brothers, myself, our family, our closest friends, we stayed with him all day, saying our goodbyes.

She sleeps in my bed and I look at her sweet innocent face as she sleeps and I'll tell you something - there's no pain worse than the pain of watching your children's hearts break. My boys too. My handsome wonderful boys. Sobbing over their Dad's body as he passed from this world. It was just so awful. It IS just so awful. This pain... the agony of watching your children yearn for their beloved Dad... it's indescribable.


  1. Hello lovely. Have been thinking of you.

  2. I came across your blog tonight as I searched for more answers. What I found was a story that mirrored my almost exactly. My dream life ended on May 9th 2012 when my love passed away at just 46 after just 5 weeks after diagnosis. He was also given 2 years. Like your husband he did not know he was dying because it all happened so fast. Thank you for sharing,

  3. Thank you Sandy. I'm so sorry your loss. One hour at a time xxx

  4. Hi Deb,
    I have just came across your blog,and feel your pain, my Soulmate had ten years and eight of those years were fine, he had a good quality of life, but sadly the last two years were just horrendious, I looked after Patrick athome with the help of a wonderful team of Nurses, bless tham all.
    Life is now very lonely, and living on my own is not easy, but I guess we have to try and move on.
    Take care of yourself.

    1. Thanks so much Loretto and I'm so very sorry for the loss of your beloved husband. Yes, trying to move on is so difficult. You mind yourself Loretto xxx

  5. For some reason I've been thinking of you lately. I hope things have eased a tiny, tiny bit since your last post. I have no words of wisdom, just wanted you to know I still think of you. I made your song "Days" part of a playlist on my iPod and I think of you every time I hear it. Hugs from America! Judy (from the Dis)

    1. Thank you Judy - we are hanging in there and adjusting. Love to you xxx

  6. Deb,
    I've just come to my room after sitting with my young adult daughter, holding her as she cried for her dad, who died just one month ago. You're right, there is no greater pain than seeing your child in pain and not being able to fix it. I know she feels the same with me, as do our 2 sons.

    I feel your loss, I feel your pain, your confusion-everything. I'm still in a state of disbelief that my husband died-it was all so quick. ER because of unbearable pain, one week hospital stay for tests, cancer everywhere, almost 3 weeks in hospice, and cremation. He had sarcoma and it decimated his body. I washed and dressed him after he died, and wept over what had been done to this man I loved more than life by this horrible disease.

    My heart, my soul, my entire body feels as if finger naiils made of sharp glass are tearing away at me constantly. I know that somewhere out there, wherever there is, is a horizon that has hope in it, but I don't see it.

    Truly, there are no words to offer you, so I will simply say that, across the distance (I'm in Arizona right now), I sit with you in silence, honoring your grief~

    1. Alison, I wish I had seen your comment sooner. I ran away from this blog for a while but I'm back and I plan on writing more often - it's therapeutic, no doubt about it. I am so sorry for your loss. So fast, just like my husband. "Finger nails made of sharp glass are tearing away at me", how true, a perfect description. I've never known pain like it, despite the loss of my father and brother. But it is easing, there is hope. Last year was beyond agony. Thank you for posting Alison and I apologise for not replying sooner xxx