126. Apologies to Shakespeare

Spoiler alert: this may make for very dull reading so skip if you want a chuckle or two. I’m having my new boob next Monday so that may be more entertaining.

To know or not to know, that is my question.

As you will know, I survived what for me might have been beyond bearing by retreating to the Land of Denial. This is what I remember (very rough quotes):

Consultation 2: Mr B, breast surgeon: ‘I’m sorry to say both biopsies have come back with evidence of cancer so we do need to reconsider our approach.  I have to say I’m more than surprised. I’m shocked and you must be too.’ Since I’d already said ‘Fuck’ after the word cancer, I just asked ‘What now?’ That involved a raft of uncomfortable, sometimes mildly painful tests and another appointment the following week. I remember Marilyn raising her eyebrows when I came out of the room and me shaking my head mournfully. Then they found us a private room till I could be fitted in the test schedule. I remember Marilyn giving me a warm hug and I may have had a tiny cry but mainly all I could think about was I’d have to have surgery and general anaesthetics can make you sick. Sigh.

How can something so pretty be so lethal?

 Consultation 3:  ‘All the tests have come back positive for cancer, including the three biopsies of the sentinel node. This is worrying. It does mean we have to forget about all the earlier options. You need a full mastectomy with what we call axillary clearance. At a later stage we can consider a reconstruction but that’s best left till after any follow-up treatment you may need.’ By ‘three biopsies,’ I’d said ‘Fuck’ again so I just said ‘I’m not bothered about reconstruction. Just do what you have to do.’ This time I’d taken Marilyn in with me. Why not Dennis? I hadn’t considered involving him at this point when it was all up in the air. Very inconsiderate of me but it still didn't seem to be a big thing. I remember Marilyn taking notes but the only questions I asked were about the potential for the operation to cause nausea or vomiting. I remember saying I’d be really grateful if he could arrange it so I could go home the same day and he said he’d do the operation around 8am. Turned out to be more like 11am but I still came home :)

               

Consultation 4: This time I had Dennis with me. ‘I’m afraid none of the results were good. We found two large tumours, the one under your nipple that you know about and another leading to the side...no margins...19 of the 21 lymph nodes were infected so you will need to have a CT scan to see if it’s spread from there and I’m afraid you will need to have chemotherapy and radiotherapy...” There was more. I was numb and said nothing. I don't remember if Dennis said anything but we did discuss the option of remaining in the private system or transferring to the NHS. After a vague indication of possible costs, D and I agreed we’d prefer to stay in the private system but at a hospital nearer to us and he said he’d arrange it. Then Mr B brightly said he’d see me in 12 months for my follow-up appointment. I remember wanting to laugh but I don't remember if it was genuine or cynical laughter.

All gone. Just scars and cording left to see - and the aesthetics don’t bother me one bit.

So, three consultations, some factual details, none of which went in but which were included in copies of correspondence to my GP, which I still have and, at best, have only skim-read, and many opportunities to ask questions I should have asked.
1. What type of cancer is it? What stage is it?
2. What does ‘no margins’ mean in terms of the success of the surgery/long term success?
3. What is the likelihood of the cancer having spread elsewhere?
All I could think was chemotherapy=vomiting. I was sore, in fact in pain, suffering from acute discomfort from the allergic reaction to the dressing and emotionally numb from terror at my equation

chemotherapy+Jan+phobia=nausea+vomiting+I can’t do it.

I just asked about consulting the oncologist at Roundhay!

Consultation 4: Dennis and me with Dr K, who wanted to know all about me before even talking business. This is the private system for you - they have the time - but I suspect he’d been alerted to my ‘quirk.’. Then came the facts of my cancer that went in one ear and out the other (apart from ‘it even broke out in your skin’ and I didn’t ask why the ‘even?’) and a look at the computer screen at the statistical difference each treatment would make to my long-term chances of survival. All those questions I should have asked. But I truly didn’t think I could handle anything else. Dennis viewed the statistics with a trained statistician’s eye and was scared shitless. As he’d said he would prefer not to see the stats and I overrode him, it’s not surprising he didn’t ask any questions as he didn’t want to scare me or himself. I remember his making a few flat comments, one of them a challenge to Dr K’s optimistic interpretation. I was completely focused on chemotherapy meaning unavoidable sickness and how on earth I could manage that. So Dr K followed my lead and focused on how chemotherapy had moved on and they could do all sorts now to make it as comfortable an experience as is possible in these circumstances. Then the question about what I had against St James’s and the suggestion that he arrange for me to visit both the private and the NHS treatment rooms and then make a decision (lots of warnings about how costs could soar from the basic £40k to the one insurance claim he’d signed that was over half a million).

I could go on and identify other opportunities where I should have asked questions but I was ‘happier’ in the Land of Denial. I do remember saying to T, the adjuvant oncology nurse responsible for me that it was a good job it did break out in my skin or I’d still be happy as Larry, ignorant of the disease spreading its nasty tentacles elsewhere.  T was always positive, telling me I was officially cancer-free very early on, referring to me as NED - but I didn’t see her towards the end of treatment. I saw Dr D who was more focused on moving me onto the next stages of treatment that she was in charge of - the radiotherapy and the hormone therapy. It was only when I joined the Breastcancercare forum online that I realised how well-informed most people were, how they knew what HER+ meant, what ‘margins’ were and stuff like that, that I began to think maybe I should know a bit more and now I have this urge to find out what I didn’t know before. Maybe it’s because I feel safe now - my tests are cancer-clear, I haven’t been sick or even felt sick (except with anticipatory fear) - and it’s time to understand the long-term prognosis. But do I want to know percentages? I fear it’s a bit too late now. The curiosity, maybe the need to know, is there and I’m not going to be able to push it down so it’s time to compose a list of questions and decide who best to ask. Scary? Come on, nothing can be scarier than what I’ve survived. Or can it?