Posted April 7th, 2009 by Jane

It’s living with constant uncertainty which is one of the hardest things about cancer. I felt euphoric after my decision but I confess to some wobbles over the last week or two. Though I knew it in theory I didn’t really feel it for real, that treatment offers its own security blanket. However horrible the treatment is there’s a feeling (even if misguided) that nothing really bad is going to happen while you’re on it. Plus you get to the hospital for blood tests, consultations and soothing chats with chemo nurses. I realise I feel a kind of importance having chemotherapy…there’s a certain seriousness about the way the dose is checked and the infusion given that makes me feel like I’m special. Now I feel cast asunder…now its my GP and the hospice nurse with responsibility for my care, not the hopsital consultant, not the specialist, the cancer doctor, the oncologist.

This is a whole new phase of the cancer experience. It has an added gravitas, a seriousness which is at times overwhelming. My GP rang this morning to ‘touch base’, and I talk to her about the increasing pain from my tumours…and she gives reassurance that there’s plenty of scope in the morphine dose. The hospice nurse is helping me dispel the slightly guilty feelings I have that I’m not trying hard enough…(that dreadful word ‘fighting’). She reassures me that many people stop treatment a good while before I have. I ponder and start to develop a theory that the people who use on line cancer forums are more likely to keep going on treatment for longer. A cyber friend points out this may be because people who use cyber forums are generally younger and she’s right…in on-line breastcancerworld I meet more 30, 40 and 50 something than I do other 60 pluses.

I don’t know how long my window of opportunity is going to stay open. How big can my shoulder and neck tumours grow before they burst through the skin or crush my lungs or oesophagus? Last week I was reassuring friends that I had a while to live, now I have fantasies about a sudden demise, about accelerating cancer.

The Guardian today has an article about a Phase 1 trial for ovarian cancer which has produced much better than average results. Generally between 5% and 20% of patients get some medical benefit from Phase 1 trials but this particular trial showed improvement in 8 out of 18 patients. ( The other 10 are dead.) So have I made the right decision not to pursue Phase 1 trials…have I forfeited an opportunity or made a sensible rational choice? Last week I read a brilliant article in the journal Clinical Trials by Franklin Miller and Steven Joffe. Called ‘Benefit in phase 1 oncology trials: therapeutic misconception or reasonable treatment option?: it sets out the pros and cons. It’s a hard academic read but It brings some comfort that I’ve been right, that I’m facing squarely the reality that no drug now can save me, that a few extra months on treatment won’t be anything other than a few extra months on treatment.

Meanwhile R. and I make determined and modest ’to do’ lists and we do most of them. Hospice nurse tells me if there are things I want to be sure of doing I must do them now, because there may not be a later, but it still feels too soon to start writing my goodbye letters. But I do ring BT and Southern Electric to put R.s name on the household bills too…just in case. It will make it easier later when there is no Jane.

April 9th: a couple of people have asked: yes I can be referred back to oncologist if an oncologist’s input needed..for bone or brain secondaries for example.