Prognoses

Something I used to hate doing as a teacher was giving a student a predicted grade. While you had to be realistic, you were also aware that should you be too realistic or too harsh, you didn’t leave any room for improvement. In other words, let’s say that pupil x’s papers were lost or for some reason, the exam couldn’t be written, the predicted grade would probably be considered. In addition, some universities use the predicted grade as part of evidence upon which they base their entrance applications. I guess it is the same with a doctor giving a prognosis. If he/she is too realistic, his/her patient might give up hope and deteriorate more rapidly than if he/she gave a more conservative prognosis. On the other hand, if he/she did not base the prognosis on the medical facts and the general statistics available either through research or personal experience as a consultant, then he/she risks giving false hope to the patient. I’m rambling, I know, but bear with me, I’ll get there. I’m just trying to understand how to react to prognoses from the other side of the fence, as a patient, not as a teacher.

Since my diagnosis, I have tried to pressurise my consultant oncologist to give me a prognosis, a clear picture of how HE saw my health progressing or regressing. Each time, he was evasive and pointed out that while there were statistics, he was in no position to actually predict the future. He was very good at changing the dialogue, at deflecting my direct questions. Normally, as part of my personality, I would probe and insist on direct answers as I hate beating around the bush. I want to know facts, the truth, in order that I might react accordingly. But what are the facts? Over 9 years ago, my cousin Bertram was given 6 months to live, a prognosis based on his diagnosis of stomach cancer. It has been a huge challenge to him but he is still alive and has managed to beat the odds. Other people I know have gone quickly, according to the predicted time frame suggested by their doctors. I don’t think that statistics or predictions can be considered facts, and unfortunately, in many cases of cancer and other illnesses, doctors can only go by their experience, by what they’ve learned and researched, and by patterns they observe in their patients. What might be the case for one patient might not be the case for another.
I have heard the expression that cancer is a silent killer. You often don’t know that it is there until it is too late. We’ve all heard stories of people who have gone in for some random test or symptom, only to find that they have cancer. My consultant thinks that my cancer developed within 6 months. As much as I hated the publicity (and admit to strongly disliking her) that Jade Goody received during her fight against cancer, in retrospect, I realise just how suddenly it can appear and just how rapidly it can overcome the person who has it. I often wonder why scientists can create test-tube babies, clone sheep and do myriad other amazing things, but cannot find a cure for cancer? I cannot understand how or why with all the time, money and effort that goes into cancer research, scientists cannot come up with something...but then again, I suppose that they have come up with some amazing results, just not enough yet to save those with terminal or incurable cancer. I used to, and still have the cynical view of cancer in the sense that no matter how long you escape it, the inevitable is going to happen. Once you have it, it might not get you now, or for the next few years, leaving you in remission, but it will come back and it will come back stronger and you will not defeat it. I feel bad writing this as I feel as if I am disrespecting those people who have cancer and who feel and believe differently, cancer survivors, my cousin being one of them. However, I am not saying that we should all just give up and say “oh well, what’s the use of fighting it if it’s going to kill me in the end anyway...”, to the contrary, I’m just trying to find a way to say: “we all know how this is going to end and maybe we should start talking about it.”

Every time I try to talk about my impending death with friends or family, they immediately put a positive spin on everything and even go as far as saying “you’re going to make it”. My sister and one or two friends have reacted differently and have allowed me talk about it. I’m not criticising anyone or suggesting that avoidance – in this case - is the wrong approach, I’m just saying that sometimes I want someone to be realistic with me, to acknowledge my need to say out loud: “I know how this is going to end” even if I am prepared to fight it all the way. I need to talk about how I want to die and what I want to happen after my death. I need to talk about who wants what of the few possessions I own, about what kind of “service” I want...I need to talk to you to reassure myself that you are going to deal with my death in a healthy way, not in the way that I dealt with my grandfather’s death for many years, hanging onto pain and sadness and loss instead of moving on, of celebrating life rather than mourning death. I need to know how you really feel, even if it means that we end up crying together, because I know that it will make us more prepared and stronger for having had the conversation.

Today, I saw Dr. Lee, the senior consultant whom I have never met before although he has been my consultant oncologist on paper. I had been quite stressed about this appointment as I knew that he would have the results of my latest chest and abdomen scan and that he would make the decision as to whether or not to proceed with the final two cycles of chemotherapy. Dr. Lee was as friendly as Dr. Forster whom I’ve been seeing until now, but I sensed that with Dr. Lee, if I asked him direct questions, I would get direct answers. You see, there is a cultural difference here. Dr. Lee is Chinese, not even British-born Chinese, whereas Dr. Forster is pure British. Now before you think I am about to make racist assumptions, I will admit that I am perhaps making a cultural assumption but it is an assumption based on my experience of living and working with British people over the last seven and a half years or indeed, for most of my life. Dr. Forster was always careful to be polite, to look on the bright side, to smile and not actually say anything too upsetting. Dr. Lee, however, just said it straight out. No hesitation, no sugary coating, just answered my direct questions with direct answers. And while I didn’t like what he said, I appreciated at last having a frank conversation about my health. Yes, I am speaking about my prognosis. I am not going to tell you what he said and I will reiterate that he was only saying what he knew from experience, not fact. He did make it clear that there was no way of knowing exactly but in his experience, that was what he thought. I need to emphasise to you, friends and family, that I am not going to let this information affect me negatively; it is information that I needed in order to have a reality check, in order to have a clearer and more honest framework on which to base my future plans. As I said in previous blogs, one should always remain positive and there is always hope for a miracle cure, whether through medicine or through alternative measures.

Over the weekend, I coughed a lot more than usual and reminded myself to gargle or to get out my stash of strepsils. But of course, laziness set in and I didn’t do either. The result? I have lost my voice again. The oncologist gave me an antibiotic to help fight the chest infection that was causing the cough to be so active so hopefully, if I am able to shut up for a few days, I will get my voice back a lot more quickly than the last time I lost it. Unfortunately, I had to cancel my clients for today but at least I got some rest. Although the results of my last scan show that little change has taken place since the last two cycles of chemotherapy, I agreed to go through with the last 2 cycles which I start tomorrow. I’m not going to moan about it as this was entirely my choice, not an easy one to make, but the right one. I have nothing to lose and possibly something to gain from going through with the treatment. Dr. Lee has said that if at any stage I change my mind, then I can withdraw. So, tomorrow I shall head off to the Rosenheim building once again and hopefully have enough voice to give the nurses a run for their money. My chemositter for tomorrow is meant to be Vojta and I might stay with Morse in Liverpool St afterwards. Nothing confirmed yet. It was really great to see David McGregor (ex Bishop’s Stortford College) yesterday when he accompanied me to my oncology appointment. I hadn’t seen David for at least 5 years; he is in the final stages of his medical degree. It was nice to be able to chat to him about my appointment with the oncologist. Each day I realise just how blessed and enriched I am by all the amazing people in my life.

Right, let me sit back and watch some television while my numerous couchsurfers look after me. What a life!

Until next time,

Au revoir.