16 June 2015 – This is ruining my life (Cancer and Me 33)

1st August 2015 2 By Andy Burrows

It’s now Tuesday, six days after getting the biopsy result and being told to get ready for intensive treatment for relapsed high grade lymphoma. They said last week they’d confirm the results “in the next few days” and hoped to get on with intensive treatment starting within a matter of days after that. Six days later I still hadn’t heard a thing. Not a confirmed result. Not an invitation for a bone marrow biopsy. Not an appointment for PICC line fitting. Just an apologetic, “sorry we haven’t heard anything yet, but you are at the top of our priorities”, whenever we called to chase up.

I met with my boss, at a coffee shop, yesterday and discussed handing things over. Apparently they’ve found someone who can take on my project management responsibilities, and he is starting next week. I will be helping out in the background, reviewing documents, giving advice, pointing in the right direction, as and when I can. But deep down I wonder how much I will end up doing. Once they get used to me not being around, discover that they can actually manage (or muddle through, so I’d like to think), realistically my contribution will fall away. My hope for continued work and income might be a little optimistic.

I worked at home yesterday and today, reviewing things and sending in comments, updating documents, and doing what I could to keep things going, listing out things for other people to follow up on and do.

And all the time it’s tense, not knowing, wondering, “why is it taking so long?” What is it that means this last bit of confirmation is delaying the completion of the report? We chased the hospital 3 times today, the nurse specialist telling us each time that she’s trying to get hold of the doctor, but he’s in clinic or not around.

And then today, late afternoon, I finally got a call from the haematology doctor. The biopsy report had come through at the end of the previous day. It shows low-grade follicular lymphoma with no evidence of transformation to high-grade disease. He had wanted to discuss this with the Southampton consultants in the MDT call this morning, but they weren’t there, and they didn’t appear to be available during the rest of the day either because he’d tried to contact them in between patients at his clinics.

Obviously that is potentially going to change the treatment plan somewhat, but he couldn’t tell me what the plan is until he’d talked it through with the senior doctors in Southampton. So he promised that he would see me to go through it all in the next few days.

“So much for 90% certain!” I said to him. All he could reply was that that’s what they were told by the pathologist. Even in the meeting last week I’d said, “so there’s still an outside chance it could be low grade?” And I was told basically, “Not really. We have to go on the basis that it’s high grade. It’s really only 5-10% chance that it could turn out to be low.”

The point they don’t understand is this whole situation would be different if he’d answered that last question with, “yes there is still a small chance that it could come back as low grade. That’s what they are checking. So we won’t press ahead with anything until we get the final report.” I would have gone back to work, not told everyone, not handed work over, and we wouldn’t have told the kids so soon, nor extended family, friends, church.

As it is, I know, for instance, that an announcement went around the project team at work saying that I am stepping back from the project to concentrate on my treatment. People have started sending me notes of sympathy and best wishes. I am being essentially replaced. That’s what happens in a high pressure, fast paced project. They can’t afford to leave a gap in a key position like mine, and so they have to act fast.

Thankfully I had decided not to post the news on facebook to bring the rest of our friends into the picture until the news and treatment was fully confirmed. But there’s no embargo, so news is filtering around.

So I’ve got to wait to see what’s going to happen. How long have I got to wait now? Will I be called in to see the doctor tomorrow, Friday, next week? What am I supposed to do in the meantime?

I don’t even know specifically what the options are now. I know one option is to do nothing, watch and wait. What are the other options? Go ahead with the stem cell transplant? R-CVP again? Given that I feel the lymphoma much worse than three years ago, and they treated me then, why wouldn’t they treat me now? Would they still do R-ICE, or is that definitely off the agenda now?

And I’m not actually in the mood to let them talk about me behind my back and then tell me what is going to happen to me! I want to have my own say. I want to know whether the biopsy report is 100% categorically right now. I want to know why it was so difficult to say. Is it normal for biopsies to be so unclear that they take more than two weeks to pin down and give strange results?

I want them to understand that they can’t just assume that ‘watch and wait’ will give me a better quality of life. They say that by giving as much time between treatments as possible they are considering one’s quality of life over the long term. And if it was unequivocally low-grade each time, and it was every 5-6 years, I could go along with that.

The reality is that this disease is ruining my life. Low-grade or high-grade, the fact that every two-and-a-half years I have to go through the uncertainties of CT scan results, biopsy results, deciding what it is exactly and what the treatment should be, all means that I can’t move on.

I’d started to think, in the last couple of months, about moving on in my career, finding a way to move forward once my time on the current project was finished, getting away from projects and back into senior leadership in Finance. With this kind of uncertainty how can I sell myself anywhere? I’ve just had to put my recruitment contacts on hold. How are they going to have confidence to sell me in anywhere now with constantly uncertain health?

I am fed up with this disease. I don’t want it any more. I don’t care whether medically they call it a ‘chronic disease’ and it can be managed over many years. I don’t care if it’s not life threatening at the moment. I live every day with the possibility that the life-threatening version may appear at any moment. I want rid of it!

Given that I’m mentally prepared for intensive treatment – for heaven’s sake, it was supposed to be starting tomorrow – I would actually rather go on and have some treatment and give myself a chance of completely getting rid of the disease and being able to move on with my life. I’d rather give myself a chance to do other things rather than constantly being ‘that guy who has cancer’.

But we shall see. There are probably more twists and turns to come.