Kate's Blog

Follow me if you will as I try to navigate through the ups and downs of my world.

I'm writing this blog to help me make sense of all that has happened - from my diagnosis with non-Hodgkins lymphoma while pregnant with my third child in May 2008
, through to my reflections on chaotic family life as I try to pick up the pieces of my life again.

The kids are so small, and I'm working hard to keep us all safe and to stay in remission.

Stay with me - it won't be all doom and gloom I promise!

Tuesday, 2 March 2010

That old devil again

Oh dear. What did I do last night? Well, I gave in to the awful demon which hovers sometimes on my shoulder and for the first time since I was diagnosed with non-Hodgkins' Lymphoma, I looked the disease up on the internet.

From the outset I'd decided to entirely trust my doctors and not to read lots of scary, complex stuff which I'd half understand. And I stuck to it. The battle seemed too overwhelming without confusing the issue. I was very clear-headed about this decision much to the bemusement of some of my friends.

But last night for a couple of hours I surfed around. My version of the disease is very rare. Last night I found out just how rare. I found descriptions of the type of chemotherapy I'd had with medical analyses regarding its harrowing nature. There were accounts of deaths having undergone the chemotherapy I had, and accounts of deaths after the stem cell transplant I underwent. There were reports of the long-term effects of the chemotherapy - heart disease and other cancers.

But worst of all I stumbled across a study written for a medical journal. In this study out of 152 people who presented with NHL only 7 had the type of NHL which I had. Five years later, out of the 7 only 3 were stll alive and they had all had surgery to remove the tumour in their chest which I didn't. My (enormous) tumour was shrunk by the chemotherapy and I still have a lump of scar tissue left in my chest. Of the 4 who died, 2 died of chemotherapy related issues while having treatment, one died after the cancer had returned having been in remission for 6 months; and one died when the cancer returned after 46 months!! Oh my god! My consultant very clearly told me back in October that I wouldn't be anywhere near safe or even with the danger considerably reduced until 3-5 years have passed. That's not until 2012-2014. So I knew that. But imagine sailing along 46 months into remission feeling ok when the bastard returns. That's nearly 4 years. I've only been in remission for 1 year. It's all too much.

Of course it does NOT NOT repeat NOT help to read all these things. I've been feeling much more positive since my scan in January and have been more able to look into the future with something approaching equanimity. And I really have been shaken by all that I read - and there was much more than what I have described here. I feel quite traumatised really although reading all this hasn't told me much that I didn't know. It's just very very hard to read it all in black and white. Rog is very cross with me for doing this and upsetting myself although when I was first diagnosed he confessed that he'd spent hours looking online as well. I don't feel that I can burden my family and friends with all these new worries or rather these old worries which have reared their ugly heads again. So I'm using my blog instead. I hope you don't mind.

I think I need to try to rise above the anxiety although that's easier said than done. But, it is easier than it was. I hope it is anyhow. It's not feeling so easy at the moment.

However, it's another lovely spring day. Perfect, now - which is all anyone of us have after all.


hannah said...

oh Kate. xxx

Tracey said...

May I suggest a different view.

From my distant and healthy perspective, what I see is a woman who is in remission, but KNOWS she won't be fully recovered for 5 years.

Yet, this same woman regularly (I would guess daily) beats herself up, because she does not exercise enough, has not lost weight, has not finished her novel, is not contributing financially to the family, is too tired to meditate let alone be the mom she wants to be.

I think what you learned on the internet last night, while terrifying, might be just what you needed to hear, if you really listen. Give yourself a break.

You are in remission, but you are not recovered. You are recovering. You should treat yourself with the patience that a recovering person deserves, and demand that others do too.

This soap box moment brought to you by a complete stranger who knows you not at all and has no business interjecting an opinion of any kind, but chose to anyway. I'm bossy like that.

As always, I will include you in my prayers.

Anita said...

I don't know what all that means for your future, but I do know that "You gotta live!" You're alive, possibly for tens and tens of years to go. :)
I can't begin to put myself in your shoes, therefore, I don't have specific advice.
I just know that you have to keep living - feeling, liking, loving, doing. :)

Kate said...

Thanks xx

Kate said...

And you're right, Tracey, I do beat myself up constantly about everything - I'm always striving to be in a different place than the one I am in now. One of the other things I found out last night was that people who've had NHL often experience major fatigue for quite a while. So, maybe that can help me to let myself feel tired sometimes....