Please sir can I have some more...

"Every man's disease is his personal property"

 Alonzo Clark



"Knowledge is power"

Francis Bacon


Having written about my concerns over Pink October last week, I have been thinking more generally about our healthcare system and the part that we play in it. Obviously in my case, having breast cancer, I look at the role that the Pinkness of BC awareness plays in the potential for us to undermine the dangers of it. However, I am also aware that my journey through breast cancer and my current situation has also been partly due to the way in which we interact with our health care on all levels.

I guess I have to conclude that we are still a pretty deferential bunch when it comes to dealing with doctors and other health care professionals. I believe that I went into my diagnosis with a mixture of pink blind optimism and hard to shake old school deference. I have learned the hard way, but perhaps others could learn through my painful experience, the easier way.

Lesson one that I think  is important to take heed of is this, our NHS is overstretched and it is managed by mainly non medical people. As a result of this the system is organised in such a way that its main aim is to be cost effective. It is run as a business, that is a reality and has been for a very long time. As a business it works on averages and statistics. It is not run on looking at each patient as an individual. That is simply not good business. Therefore the reality is that you have to look after yourself within this system. It is essentially your responsibility to get the best deal. You have to broker your own medical attention. To contextualise this here is my situation in brief. I was diagnosed with breast cancer and told that the proposed procedure was a lumpectomy followed by possibly/probably radiotherapy. Now this was on the premise that my cancer was grade 1 (maybe 2) and non aggressive. This was based on statistics showing that more breast cancer was likely to be grade 1 or 2. My cancer was grade 3, aggressive and triple negative (less researched and therefore less easy to treat with already developed drugs). I subsequently needed chemo. I have since been quoted this: "there is not a significantly higher rate of recurrence in women who have a lumpectomy versus a mastectomy". Now the key word here is "significantly". I (too late) have researched this and found that indeed there is a higher chance of recurrence for women ( I realise that men suffer from breast cancer too but it is mainly women) who have a lumpectomy. I have no interest in the word "significant" or indeed statistics. I am ME and I wish to be treated as such. I had a local recurrence which meant that it was the same cancer in the same area. Again this is my belief but none of it was discussed properly with me, if I remember correctly (but I was hysterical at the time) the original surgeon said to me "we may not have got all of it first time around". Hmm, they missed a bit. Now my point is this, a mastectomy would have ensured that this was not the case. For many a recurrence means that the cancer is in the chest wall. A lumpectomy versus mastectomy as far I know would not make a difference in such a scenario. This backs ups the theory of them both having pretty much the same outcome. However, this wasn't the case for ME. To date scans are still showing that I have no cancer in the chest wall, my recurrence was contained within the breast, without a breast I would NOT have had recurrence which then metastasised and would not be living with terminal cancer today. And so back to my whole message. I don't want to be treated based on averages, I want to be consulted, thoroughly on MY best plan of action. The one that will help to keep Lesley Graham alive. I wasn't! I would have liked to have been given all of the facts and then presented with my options. The facts that I have uncovered for myself today would, I believe, have led me to opt for a mastectomy 2 and a half years ago

Then there is the reality of this. Our system doesn't stretch to such luxuries. The breast clinic is a busy place. The waiting room is always full and there are only so many doctors there to deal with us. There isn't time to consult thoroughly with everyone. Bottom line, resources are finite. I understand this more than most having been a teacher for many years. I was frustrated at the shortcomings of the system (30 pupils ranging massively in ability all in one class, is not a recipe for a sound education for everyone), my hands like every other teacher were tied. I wasn't enabled by the system to do my job to the best of my abilities. I have no doubt that this is the same for doctors. They are working to business plans, created by people who are trying to save money. But the key to preserving your own health, no matter what the condition, is to be less deferential and more in control of your illness. Ask for more information about your illness and your future. Don't be afraid to take up more time with doctors, this is your life at stake. This is not easy, when given a diagnosis of cancer or another life threatening illness, you have enough to deal with, but it is essential I would say, and I think I am the proof.