Monday, August 11, 2008

Speechless

The experience of your child going through cancer is not easy to comprehend. We know that there are many people who are incredibly sad for us and for what our family is going through. But the other families who are sharing our experience, the ones we see far too regularly when we visit the hospital, they know. They understand. And though we all deal with it in different ways I think we all understand what each of us is going through. And so, when someone we have come to know gets bad news, we all feel it. We understand it's ramifications for the affected family, but there is also the thought of "what if that is the same for my child?"

We have each spent a lot of time talking with other parents about this journey we are all on. Often we will return half an hour after we have gone to the kitchen because we ended up chatting to someone. We share with each other what our children are going through, and there is no need to explain it, because we each understand what it means for our child to be constipated, or on steroids, or to have mucusitis, or to be neutropenic, or to be having chemo. And so, you make friendships with parents, and you come to have a love and affection for their children. In a strange way, I feel as if we are all the parents of all the children in the ward. And so news that is devastating to families, is also devastating to us. In the last couple of days, we have shared a bit of some others journey's, and they have left me unable to say a thing. And sometimes there is nothing to say, other than to console, and reflect the unfairness of it all, often with a couple of choice expletives. One of our friends faces the choice of whether or not their child should get radiotherapy. There are so many if's, but's, and maybe's that the decision is far from easy. And the consequences of either choice could be devastating. I don't think we will have a similar situation with Oliver, but we never expected to be where we are either.

I ran into another of our friends today, and having not realised they were in the hospital, asked if they had been in for a checkup or some outpatient treatment. Unfortunately, they had been in for a meeting. The chemotherapy that their beautiful young daughter had been enduring - that had caused her to lose all her hair, be extremely nauseas, go through the rigmarole of mouth care, and who knows what else - had not produced the desired effect. The only other option was an amputation. Of her leg. At the hip. She is 9 years old. I was speechless. I couldn't say anything. I hugged her, got a few details, and we went our separate ways. And it was all I could do to keep from breaking down in tears in the cafe in the hospital.

I am yet to deal with our situation in any meaningful way. This news brought that home to me. This week is a big week of followup scans for Oliver. Someone said offhandedly today that these scans weren't that important, but they are vitally important. These scans will give us an indication as to how effective the chemo has been. These scans could indicate that Oliver's chemo is doing everything it should and will run exactly to plan. They could also tell us that we need to do more, that the current protocol isn't working and we need to make some changes. I haven't considered the real nature of it all - that this is cancer, and the chemo isn't the same as giving antibiotics for a simple bacterial infection. This may not work. Oliver may not be making the progress we expect. I believe that he is improving, but I don't know. I can only hope that the chemo is doing the trick.

He was better today. We have so far been able to avoid the morphine, and he wasn't overly unsettled today. We did have an extremely funny experience with a very runny, green and copious poo, followed by a fairly substantial wee while we were cleaning up. But changes can be swift, and we only hope that we, and the staff, can intervene early so that small changes don't cause big problems.

If you have a friend who is experiencing what we are going through I have a suggestion. Make them a meal, give them a hug, and just let them know that they can call on you at any time. it's hard for us, but I am learning that we need to be direct, humble, and to take people up on their offers.

To our friends from PMH - we love you, and will support you in any way through this time.
To our friends outside PMH - thankyou. You may not get it personally, but thankyou.

3 comments:

Unknown said...

Simon, I read your email first thing today and have been thinking about you all day....are we only supposed to write good things and say good things? After reading your mail from yesterday there really doesnt seem much good around. So I want to share the following with you. There are so many of us that have had their lifes affected by cancer in one form or another. A girlfriend from my teens had a back ache, which ended up being cancer - she died 4 months ago. My best friend Glenys found a lump in her breast 2 years ago - she died 6 weeks ago.
10 weeks ago my 80year old mum was fading away in front of me until they finally discovered she had a cancerous tumour the size of a grapefruit inside her - after a 5 hour operation they got it out and she is making a remarkable recovery.
So what have I learnt from all of this. Life is shit sometimes. You are allowed to have bad days. Take each day or hour at a time. Be humble. Accept help. Tell the people you love how much you love them. Accept their love.
My mum is 80, Oliver is 8 months - miracles happen.
I spoke to Greg last week and he said he didnt know how you both kept so strong - I said what else can they do, you just do it, you have no choice.
Keep strong for your baby boy this week. Give Karli and hug for me.
Love to all from Jeanette

One of the Stanleys said...

Karli & Simon

I think that we're all feeling very un-nerved by what's happened this week in 3B. And you're right - there is NOTHING you can say to make E's parents feel any better. What an absolutely devastating thing to happen to them all.....

You guys are so good at articulating what goes on in our heads and hearts on an hourly basis. As I sit reading your blog, I'm nodding and feeling what you're saying. We do become a kind of bizarre family because as you say, we all understand what we're all going through.

We just have to have faith....

Meg is having all of her review tests this week and results next Wednesday. We were expecting to hear that her chemo had worked, and maybe it has, but having had the news this week about E, we are not so confident. It's just so damned scary.

I ask about you guys every time I'm in 3B and was SO happy that you managed to get home. It's daunting, I know, but it's so much better than being in hospital; you describe the experience of living in a hospital room so well.....

Please know that you're all in our thoughts. I'm sure we'll meet up again soon. In the meantime, stay strong...

Much love, Jane & Meg xxx

Christine Kirby said...

Dear Karli and Simon, My heart goes out to you as you walk this journey tonight. I know you will strong as you have been, even though you may feel weak. Little Oliver is counting on you, for in his nightmare world you are both his reassurance and strengh in your love for him even when the tears are there. This is where you draw on your love for each other and others to help sustain you through this. You know when I had Elisa and Matty I always believed they were gifts from God and I felt I never knew how long I would have the gifts. When I read of your 'sharings' with others in ward 3B, you all bring some small measure of comfort to each other. Treasure each day even the bad ones for even in those you will find some joy, a look, a smile, maybe his little fingers holding yours. I know you will be provided the strength and love you need from the one who loves you, even when you think you cant feel it. A warm hug to you all Luv Christine