Emotions and trust
Emotions are normal, especially when you are dealing with MBC, but this aspect is often overlooked by the medical profession, and is misunderstood by us as well. Who is going to accept this diagnosis without emotion? Who leaves the hospital and punches the air with delight? There is no right, or wrong, way of dealing with this so don’t compare yourself to others – you are an individual. Dealing with emotional impact of cancer can be the hardest part; meds and other treatments can help with the symptoms but the emotions are more difficult to deal with, especially in the wee small hours.
One of the things I found to be most helpful was learning about Mindfulness Based Stress Reduction and using meditation to refocus my mind on this very moment in time. In reality this is the only time that we actually have, yesterday is history, tomorrow is a mystery, as the saying goes. Use the life that you do have now and don’t waste it giving cancer more power over your life than it has already. I try to live in peace with it, accepting it as part of my life, but I also make sure that it knows that it is not my top priority and so it needs to sit in the corner and play nicely with the rest of me! It may win in the end because it is a sneaky thing, but in the mean time I have cancer, it doesn’t have me!
The emotional impact is one aspect where those with Mets could do with more support, but it is also the one that family, friends and the medical profession shy’s away from, possibly because it is unique to each individual and therefore there can’t be a one-solution-fits-all approach. Any help needs to be tailored to the individual, and sometimes the individual is not really sure where the help is needed so they can cope better. Anti-depressants can help, if you can find the right one, but it is also down to each one of us to get some form of ‘a grip’ so we can make the most of our lives. A lot of people don’t want to hear that. They want the quick fix of taking a tablet, but who else but ourselves can really deal with the stress, panic and fear? I searched for the magic pill but eventually I recognised that the only way forward was for me to start taking control of my situation.
Patient empowerment is not something that the medical profession seems to be comfortable with, but it can preserve your life – literally. A few years ago a friend on a forum did some research for herself and went to her oncologist with information about RFA (Radio Frequency Ablation). He had never heard of it but referred her to the Royal Marsden Hospital in London where some tumours were removed using RFA, and this extended her life by over a year. Although I would once have blamed the oncologist for his ignorance I have come to take a slightly different view.
Once a doctor is qualified s/he must rely on CPD (Continuing Professional Development) training as they work their way up the ladder. As anyone who has done the slightest amount of research for themselves will know there is a tonne of information out there, especially about breast cancer. If a doctor is working full-time, actually has a personal life and leisure time this can make it difficult to fit in all the reading especially if they are not steered in that direction. Also at the beginning I gave little thought to the pressure that some doctors must work under when they work in oncology and constantly have to deal with giving bad news as well as good. They must ‘protect’ themselves to be able to survive and function in their outside life. After all how would you go about telling someone that their disease can no longer be cured, especially as we tend to be ultra sensitive to everything concerning this diagnosis. Some people hate the saying that you might be hit by a bus. For me that is acceptable, I might be, but I do have the advantage over ‘ordinary’ people that I have the knowledge that the bus is out there and will eventually hit me. They just look at it as something that might happen – I know it will. Therefore I treasure what I have in the present rather than stressing about the past or future. In my opinion if you do that you are wasting the time that you do have right now.
The difficulty for a doctor must also be to judge just how much a particular patient wants to know, or can handle knowing. In this I feel that they need to be far more pro-active by actually asking the patient what they would like to know; but in turn the patient needs to be honest about what they can actually deal with. I go to most of my appointments on my own and experience has taught me to make sure that I ask for test results. I was diagnosed as Stage IV when an oncologist finally looked at an x-ray of my hip taken eight weeks before. As I didn’t always see the same oncologist at the intervening appointment, and the x-ray had not been reported on, it was not highlighted for the doctor to look at it. As a result when an oncologist did look at it I was admitted straight up to Orthopaedics and had a total hip replacement a few days later because my hip was about to collapse. I had forgotten to ask about about the x-ray at the appointment between the first x-ray being taken and the appointment eight weeks later until I left the consulting room, and they I didn’t go back because I thought that I would have been told if there was a problem. However, because the reporting of the x-ray had not been done the system wasn’t working properly, partly because there no consistency about which oncologist you saw. Being proactive works both ways.
Sadly this means that I have lost a great deal of trust in what my doctors say and do. Ten years ago I had a hysterectomy and tests showed then that I might have cancer. It turns out that the cancer marker they were looking at is also a breast cancer marker and maybe if I had been referred to oncology they would have found a nice small tumour and it could have been resolved at an early stage. This was also more grievous in my eyes because I had repeatedly told the surgeon and my GP that my mother had breast cancer. They both even recommended HRT which I took reluctantly for a while and I was not referred. Eventually 5 years after that I realised that I had a lump in my left breast and again if the surgeon had listened to me they would have known that the cancer had already spread to my bones. But who listens to the patient? Doctor knows best? Personally, I don’t think so. It took a long time to get over my anger and rage at being ignored, and I still have some of it … why does no one ever listen to me, I’m not stupid! But then I also realised that this was wasting the time that I did have, and that I could enjoy, in a futile circle of anger, depression and tears. What is done is done, and nothing can change it now; no amount of tears will wipe away the mistakes so just pick yourself up, dust yourself off and get on with it. The choice is stark, but it is the only choice that is still possible.