The minutes of the meeting

Today, Alan and I did what we said we’d do, and revisited our holding decision not to have any more herceptin. We agreed that we still felt it was the right decision…. kinda. We agreed that we were doing the right thing… probably. It felt right…. almost certainly. It was all a bit unsatisfactory, really.

Cue secret weapon: it was time to get the Six Thinking Hats® out. (As you my know, this thinking tool – involving notional hats and enabling parallel thinking, fast, good decisions, and no arguments, was invented by Dr. Edward de Bono and forms the core of my work.) This is a tool I use all the time with teams, businesses and organisations to help them to make complex decisions, and it works brilliantly, time after time after time. And if ever there was a complex decision, we are looking at it. So, over the remains of brunch in Reds Bar and Grill in Wimbledon, Alan and I did some structured thinking. Here’s what we came up with. As so often happens with the Hats, we got further in 20 minutes than we did in the last three weeks.

Red Hat: what is our gut instinct about continuing with herceptin?

- Uncertain, x 2.

White Hat: what information do we have?

- The cancer has been removed in its entirety, as far as anyone can tell

- I’ve had 2 (chemotherapy, radiotherapy) and a half (9 rounds of herceptin) ‘insurance policies’ against it returning

- Throughout the whole pea thing, every medical professional assured me it was next to impossible for the pea to be a cancer, after all of the treatment I’ve had

- I have continual but varying side effects, which include: joint aches, muscle cramps, heart flutterings, chest pain, constantly sore and bleeding nose, and nausea. (Oh, and I sleep badly, but looking at that list, it’s hardly surprising, is it?!)

- Side effects have been getting progressively worse, as I have not fully recovered from one dose before I have the next

- Roche, the manufacturers of herceptin, recommend that it should be prescribed for a year

- A Finnish study has shown 9 weeks of herceptin to be as effective as a year

- The on-call oncologist who had my infected PICC removed said there is evidence to suggest that too much herceptin is given

- Herceptin has been shown to deliver great results, especially when give concurrently with chemotherapy

- One study suggests that I am in the group of people least likely to benefit from herceptin – and that’s women with HER2 positive, hormone positive, node negative cancers, not blondes or mothers or people who knit

- I will be taking Tamoxifen for another 4 years, which takes care of the hormone-positive risk element

Yellow Hat: what are the benefits of continuing with herceptin?

- We would be doing the right thing in terms of current medical thinking

- If I did accidentally sprout aother cancer in the future, we could be confident that we did everything we could have to prevent it

- The herceptin might be stopping a new cancer from growing

- I’d have something to blog about every three weeks (Alan gave me a Look when I said that. But hey, benefits is benefits.)

Black Hat: what are the risks of continuing with herceptin?

- There could be a continuing decline in my physical health and in my mental wellbeing if the process continues to drain my resources as it’s doing now

- I’d need a new means of delivery, such as a PICC or Hickman line, which means discomfort, limitations and infection risk

- The treatment may be compleely unnecessary, if there is no cancer for it to prevent

- The treatment is time consuming and hospital visits are frustrating

- We would face another 6 months of worry and stress around side effects

- It would be 6 months before we, as a family, could put this behind us

- Treatment is a drain on everyone, not just me, so we’d have another 6 months of that

Green Hat: how could we overcome those Black Hat difficulties?

-We could design a structured programme of interventions and therapies for me – hypnotherapy, yoga, counselling etc – which would happen throughout treatment rather than waiting for crisis points

- We could ask about a PowerPort or have the PICC sited somewhere where there would be less risk of infection

- We could ask about having the treatment accelerated and book other hospital appointments in on herceptin days

- We could start looking forward to what we will be doing in 6 months and onward to help us to focus on then rather than now

- We could ask the oncologist what s/he can tell us about current research and current oncological (?) thinking about herceptin

- We could involve more people in my welfare and ask for more help from friends and family in terms of helping me to cope with side effects and keeping my spirits up

Red Hat: having looked at this, how do we now feel about continuing herceptin?

Alan: still don’t know, but feel better equipped to deal with it either way

Me: happy to go on if necessary

Blue Hat: what are the next steps?

- List questions for oncologist and go to appointment tomorrow open-minded and aware that we don’t have enough information to make the decision

- If we do decide to go ahead with herceptin, put our Green Hat ideas into action immediately

*

So, there you have it. I feel much better now: much more comfortable that, whatever the decision is, we will handle it and it will be OK. We have knowledge, we have questions, we have plans.

We’ll be OK.

(If you want to find out more about Six Thinking Hats®, the book is here, and there’s more about the workshop here.)