Hi Not feeling great mentally at the moment.
Am soon to be on 8th chemo cycle (4 Docetaxel + 4 EC) as well as PHESGO then scans end of May. Been told by my Oncologist (unfriendly with poor people skills) that what's next will depend on outcomes of scans which I understand but uncertainty of what comes next is really unsettling me.
I am a young at heart 60 year old teaching support worker having retired from fulltime teaching, always been healthy - taking a paracetamol for a headache has been a big thing for me prior to getting cancer so this whole journey has been a huge shock.
I have been through the past 6 months of treatment with no involvement from my BCN during chemo. Is this normal or have I drawn the short straw?
At my initial diagnosis when I was told I had cancer - stupidly I did not know this was going to happen thought it would be a cyst or abscess- I had to wait over an hour past appointment time at the end of the working day to be seen by a Dr who I have not seen since, I met my BCN. I was told by the Dr that the other person in the room was a student then I was told that I had cancer,
So in the room was myself, my husband, a student, the BCN and the Dr who I later found out was a surgeon although if he will operate on me I do not know.
The BCN while I was reeling from this news then told me the Dr wanted to examine me although I was not told why, then to find once I was lying on the bed, the Dr touching my chest and the cold hands of the student !!!! I was not asked if this was ok, I just had 2 strangers rooting around on my breast. Meanwhile the BCN stood there saying nothing just staring, then whipped off the gown covering, my other non-cancerous breast, leaving me totally exposed. Why I do not know - I was mortified by this whole experience but I was in so much shock at the diagnosis I said nothing.
The BCN then stood watching while I got redressed, said something to me about how she should have given me privacy while I dressed and then went back into other room with the Dr and student. My husband was absolutely mystified what was going on with them all going into other room with me and then back out where he had been sitting on his own.
That was the last time I saw the BCN. Nothing since
My employers were being rather 'sticky' about a letter or documentation of some sort to evidence why I would not be in work and despite several messages being left for my BCN as to the problem and what could be done, I have had absolutely no communication at all. Absolute silence.
I sorted 'sick notes' with my GP surgery eventually but it would have relieved the stress I felt (no evidence = no pay) if someone who knows the system had helped. I was reluctant to ask my GP/surgery as my GP had told me initially when I presented with a swollen breast that it couldn't possibly be cancer as cancer doesn't hurt (what a lie) and gave me antibiotics. A routine mammogram saved me.
I have got through chemo which has been very tough - am at the stage now where I have absolutely no hair, lost 3 fingernails and now 2 big toe nails are coming out which has been painful, only with husband support which has been limited as he has to work to keep a roof over our heads. His employers have not been supportive at all and have treated my having cancer as an inconvenience to their systems - this is a white collar, City, financial job . My husband works from home 2 days a week the rest in the City so we juggle my appointments, drop offs for treatment on working from home days and then he makes up the time.
Now I am facing surgery - what sort I do not know - with acute fear as to body disfigurement with surgery (at least with a C section I got a beautiful baby)
with anxiety about male staff seeing/touching me whether they be radiographers, surgeons or whoever
with absolute silence from a BCN. Should I have the misfortune for her to show up at some point, I do not want to see her as I have no relationship with her however tenuous.
Any ideas from anyone please? I hardly slept last night due to the anxiety this is causing - I have never suffered mental health wise before I have always been strong and resolute and know what I am doing but not now.
I feel in a sea of uncertainty and being 'done to' rather than with.
Hi, so sorry to hear that you're not getting the support you need whilst experiencing something that is difficult enough on its own. I just wanted to add that the lovely folks at Macmillan are just at the end of the phone if you want to talk anything through or ask for advice. You can call them on 0800 808 0000.
Unfortunately many of the specialist doctors do seem to be male in my experience, but you are always allowed to have a female “chaperone” with you for any examination. I do agree, it can be all rather undignified and uncomfortable, I just try to think that they are only doing their job.
Hope you get some clarity soon, best wishes
