Sunday, August 26, 2012

No More Green Slips.

For the last 10 months, trips to Brisbane for chemo have been relatively straight forward. We go, we see the Oncologist, we get a green slip, we leave.

Well...

We went.

We saw the Oncologist.

We left.

No green slip.

What does that mean?

The green slip is the 'we need to see you again so we will book an appointment in X weeks'.

Nicola has finished her chemo...

There is no appointment to see her again.

And to be honest, the next person that says to me "Oh, you must be so happy to be at this point!" is going to get smacked in the face with the full wrath of a Mumma who hurts like you couldn't believe!

I posted on a facebook group last week that Nicola was facing her last chemo session and I wasn't quite sure how to feel about it... and so many people told me how relieved I must feel, and how I must be so glad to be getting back to normal...

And all it did was make me feel worse than you could possibly believe.

There is no 'back to normal' for us. There is no sense of relief... there is no happiness, there is no celebration or jubiulation. There is nothing, except an overwhelming feeling of hurt.

We have come so far...

We have so far still to go.

We know this was her last chemo session...

We also know that she is not cured. She is not NED (No Evidence of Disease) and she is not in remission. We know that she WILL relapse. We know that when she does, there is very little we can do...

And all of this was confirmed last week when we saw her oncologist for her last chemo appointment.

"You knew from the beginning that the very best we could do was to buy time. From here on out, that time is going to come at a cost."

Those were the words of her Oncologist.

Words that, from here on out, have been forever slammed into my heart.

It's not that this is anything we didn't already know... just, more that we had it confirmed. There was no ambiguity, no uncertainty, no hesitation... just simple facts.

The chemo has not worked as expected.

The radiation has not worked as expected.

She still has a very large tumor in her pelvis.

She still has stage 4 metastasis in her lungs.

Her pain levels are not going to get better.

Her pain levels will probably get worse.

There is a suspicion she is already starting to show progression of disease.

Second line treatment MAY buy us time, but at a heavy price.

Quality of life will decrease as pain increases and second line treatment will make that worse.

From our perspective, it is simple.

From here on out, we focus on quality of life. We focus on her happiness. We do what we can to ensure that she is happy and comfortable.

We focus on making our memories and making the most of every moment we have left.

The simple fact is... from now on...

Every moment is precious.


8 comments:

Melissa said...

I don't even know what to say. I don't know how I would face a moment such as that and survive it. I don't know how you can. And to be able to get up each day and spend it with her, trying to be happy. Please know I'm crying for you and thinking about you. xx

Sue P said...

The agony of not taking away that next appointment card, or the 'green slip' as you say - I don't think it's a pain that anyone can understand unless they have walked out of that oncologists office empty handed under the same circumstances. Take care of your hearts, one day at a time and yes, live and love and make memories with your gorgeous, cherished wee gal. For what it is worth, this stranger "me" will be thinking of you and sending love as you journey on from here xx

Renata said...

I'm not naive enough believe that writing clich├ęs here would make you feel any less devistated or make what you and your family are going through any less difficult. But equally I didn't want to read and run without leaving a message. Steph (Daisy's mum) lead me here, and I know that if your darling girl has even a fraction of the love and strength I see in the Nimmo family then she is in a special place amongst you all. I hope whatever time you have left will be as sweet as it is bitter, and the memories you make will help in the months to come. My love and best wishes to you and your family x

TTBA(v)JD said...

Sorry you have to go through such a difficult time, and that people don't always have the sensitivity to realise that end of chemo is not always a good thing.

Do you have a palliative care/symptom care team? That may be something you'd find useful in terms of medical care. As far as I can tell, there are two paediatric palliative care specialists in Queensland, who probably work alongside palliative care nurses as well. I have their contact details if you wanted.

Queensland Health have made a guide for children with life-limiting illnesses, it's lengthy (40 pages) but may have useful parts such as Talking to kids if you wanted info that might help you in talking with Nicola's sisters. It's here http://www.health.qld.gov.au/cpcre/pdf/chldrn_lifelim.pdf

Thinking of you, and hoping that joy can be found in this time while you focus on happiness.
ro

SharonLN said...

I have followed your beautiful blog for quite some time. What a lucky girl Nicola is to have a wonderful mother like you. If quality is all that is left, then I am sure that it will be jam packed full of love, fun and joy.
Many prayers and much love coming your way as you embark on the next part of your life journey.
Xxx

benedictesymcox said...

I know you only through Steph Nimmo. I have witnessed other parents live through the journey you are facing. I know you know that there are no words that can soften this, and I am so very sorry. We are lucky. We faced cancer with our little boy Tom, and he got better... and for a long time I did not dare speak of it to families who didn't have our luck for fear of hurting them too much. Now I speak, and I hope that I can share a little of your pain, and mostly that you know that I am one more person who will speak Nicola's name, and hold you in my heart xxx

Wanderlust said...

Hi, I'm new to your blog, I found it through Melissa. I just wanted to express how sorry I am that you and your beautiful family are dealing with this cancer. My heart breaks for you. I haven't walked in your shoes and can only imagine the pain. But please know that a stranger half way around the world is touched by your story and praying for your family. x
- Kristin

elizabeth.scoffield said...

I found your Blog through Steph Nimmo and every word you write about Nicola and your family has touched my heart. I lost my own brother to cancer this year and for once I am grateful I had 62 years with him. There is nothing I can say that will help but to reassure you that love and prayers are coming to you and the family. X X

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