I have a history of going to GPs and other medics and being told I am showing them either the wrong symptom or that the symptoms I have do not equate to either anything or anything they recognise. Either way, as the patient, I am in the wrong.
On 14 December, I went off to see the GP. The GP accused me of having unintelligible notes. This was my fault. It was also my fault he was a locum and having to read up my notes to know why I was seeing him. He then accused me of wanting to have Vitamin D3 supplements when he didn't know what the Practice's protocol was and he wasn't sure I should be allowed them. He had no idea about whether someone with 'inadequate' Vitamin D should do anything about it, even with Tamoxifen and the risk of losing bone density being pre-menopausal, and the fact I have polled out of Vitamin D before, leading to the probability I will do it again, particularly post-operatively which is when I last ran very low on the stuff and a situation I am soon to face again. Ugh. Then he went off on one about trying to print out my blood test results, which I had not asked for but he felt he should prove to me that he could. Eventually, after listening to me explain I had other symptoms that were concerning and I felt I should examine them, all of which he dismissed, I was let go, but not with any prescription. He would have to talk to my real GP, who I was due to be seeing, but who was too busy to see me although not too busy to talk about me third hand to someone who clearly had no idea.
Lo and behold, the next day the confused locum phoned to say that I was being prescribed Vitamin D3 and I should go collect it straight away from the pharmacist (although I had to explain to him how to work the process so he could send the prescription straight to the pharmacist)...
In the meantime, I had left with the Surgery my Disability Assessment form for the DWP, or whatever they are, to be assessed for incapacity allowance, which I am not due for at all, but you have to apply before a set deadline whatever your situation. I had filled out the front sections, all cheerfully saying I am fully capable at present but that I may not be in the near future. Couldn't really do anything else. And left the back section for the GP to fill in. God knows what he/she has put. I left them to send it off to DWP to save me yet another round trip.
The day after that, on 16 December, I headed off to the middle of the Borders to see the fabled oncologist. At last.
The meeting started as I was worried it might. "I don't normally see people until after surgery," said the oncologist accusingly, and "you would have had your mastectomy already if you had not chosen the type of reconstruction you wanted". I've not been so upset in a medical meeting before, so I just held up a hand, told her to stop right there, and burst into tears. I had to explain I had made what surgical choices I could with the little information I had been given, and without the full picture of the 10-15 week wait to have surgery if you have a DIEP reconstruction. I also explained I had been told to speak to her by different parties with regards aspirin usage. Also, I had never been in a position where a major drug regimen was prescribed third hand by my primary consultant without actually meeting me first. Nor had they requested any obligatory blood tests before starting me on Tamoxifen. I had arranged them myself in advance. Nor had they taken any steps to monitor how I got on with Tamoxifen.
The oncologist was a bit surprised I was worried about the tumour. It was 'only stage 2' and there was no chance of me going on any aspirin trials because I was 'too low risk'. I could take aspirin if I wanted, but she wasn't interested. Then she threw me by saying I would not be having any treatment apart from Tamoxifen. There was no apparent need for any chemotherapy, nor radiotherapy. This was news to me. Radiotherapy was one of the main factors in chosing what type of reconstruction I would have. DIEP is the best for radiotherapy. Also, all my outline schedule as discussed with the specialist nurse had radiotherapy starting post-op, week 5. Apparently, no, I was never due to have radiotherapy. (What the hell do they discuss in their pathology meetings? Who takes notes and who makes the bloody decisions? And why are the wrong messages getting to me?) Also, bombshell number two, I would probably benefit from going through the menopause fairly soon after surgery with the three options being: chemically; with keyhole surgical removal of ovaries; or, if I already have difficult periods, with full hysterectomy.
This had been one of the first things I had asked the specialist nurse on first meeting her to discuss my first cancer diagnosis results on 07 November: would I need to be sterilised? No, no. That would not be necessary. I should not worry about that.
So now, apparently, the pathology team had known from initial diagnosis that I was, yes, due to go through sterilisation. Or had the team known. Had the oncologist just not told them?
Either way, I was hearing things for the first time from the oncologist, which meant a sod of a lot to me and were extremely upsetting to be tossed into the conversation as if I should have known about them already.
I fought on, still astonished, to say I felt the lump was not the only medical problem I was facing and that I had unexplained pains in both armpits, even the 'benign' right side, that the shooting pains in my left breast were at times crippling but only fleeting, that I had chest pains at times as well, that I felt there were offal problems going on that were being ignored (kidneys, liver, lungs and gut in particular), and that I had a tightening around my upper left arm most of the time, that felt like someone was constantly taking my blood pressure with a not-fully-inflated cuff. I explained I thought some of these were anxiety related, but the shooting pains were, to me, signs of disease spread or completely separate disease which I felt was perfectly reasonable even if the oncologist had no idea about it.
So the oncologist accused me of wanting a CT scan, as if that were a criminal thing to ask for, and I asked if there were other ways to investigate what my other symptoms were. She just offered me a CT scan again and I said, okay, yes. Basically, she was trying to stop me crying. She was a bit taken aback that I was still fighting on through the deluge of tears.
The specialist nurse, who was in the meeting, belted off to talk to the CT scanning team and came back to say I could have one the following week.
Off I went, stunned, pissed off, furious with how the oncologist was basically blaming me for wanting to get my cancer treated despite it not really being interesting enough for her, and completely wrung out over the idea that I was not going to be treated more than with Tamoxifen, surgery and the sudden removal of any final chances I might have had at fertility, something I suddenly found I was not prepared to lose.
