Thursday 24 October 2013

Breast Cancer, Seeing the Surgeon, its a mix up in many ways.

12 July 2013, 14.15. I arrive at the Breast Care Centre as instructed to see the Surgeon. But there is some mix up as a Nurse abruptly informs me that I have missed my appointment as I am late. He exact words were;
'You have DNAed your appointment!'
I inform her, very firmly,  that I have never DNAed an appointment in my life and tell her not to scribe the words 'DNA' (Did Not Attend) in my notes as I am not late. I get out my letter, there has been some kind of mix up as it clearly states Friday 12 July at 14.15, it is now 14.00. She is flustered now but still says I shouldn't be there. It turns out that I should have been at the clinic in the morning, but I have not been told this information! However  the surgeon has now finished his clinic and gone to do a theatre list.

The Nurses 'busy about' and say I can see a surgeon, but not 'mine'. I say OK and get called into a room. Here we meet my Nurse Specialist, the Surgeon and a House Officer. They sit us down, give me a box of tissues and tell us they have bad news.
As I work in the NHS, I realise there is (another) a break down in communication and that this team of people do not know that I know my diagnosis. They think that this appointment is to tell me the news that I have breast cancer, whilst I think this appointment it to give me a date to have the cancer cut out. My husband however puts 1 and 1 together and comes up with 3. He thinks  that I have not told him the truth and that I am terminally ill. He looks like he is about to collapse! I quickly tell the team I know I have Breast Cancer and regain control, my husband looks like he needs the nearest resuscitation trolley, I have to calm him down.
I am told I will be booked in for the surgery, and will have a Sentinel Node Scan prior to the surgery. I am also given lots of 'breast cancer care' books to read. I don't read them, all the books go straight into the recycle bin as I prefer to Google.uk.

16 July 2013. I get confirmation of my Sentinel Node Scan and Surgery, it will be on 29th July 2013.

22 July 2013, I receive a letter from the department of nuclear medicine informing me that 'due to unforeseen circumstances, we regret that your examination cannot be performed on 29 July 2013 but will be done on 7th August 2013 at 09.30 am'. I am confused, I thought I was having the dye put in then the operation, this way round doesn't work ?

23 July 2013, I am at work, teaching customised fundal height measurement. during a break I ring my nurse specialist.
She tells me that the surgeon 'they' want to do my operation is on holiday on the 29th July so I will be having the operation on the 7th of August.
In passing, she also comments that she has got the results of a Hormone Receptor Test they did on the punch biopsy specimens.
'They are not reacting to hormones' she says.
I ask what this means,
she says 'its not hormonal cancer, it may mean chemotherapy, but we will know more when the lump is out and we really know what we are dealing with'.
I get the feeling I am being drip fed information.

At home, I Google, 'Estrogen negative, Progesterone negative breast cancer'.
It comes back to me with 'Triple Negative Breast Cancer' (TNBC). I read about TNBC, I read the research papers, I read the blogs, I read the scary newspaper stuff, I research TNBC as if I am doing a dissertation. I am after all a Health Care Professional with a degree, I know where to go to find the research.
Until this point I did not know about all the different types of breast cancer that have been found, I do now.
I also realised that until the lump was removed I could not possibly know the rest of my treatment plan, as the treatment plans were individualised for each woman  using this vital information. So I would just have to wait and see.
The next day I researched alternatives to Chemotherapy, I find many blogs and find the Gerson therapy. I read all the information about vitamins, Kale, Broccoli sprouts. I dusted off the juicer, went to Aldi and emptied the shelves of fruit and veg and started to 'Juice'. I went to Holland and Barrett and brought super vitamins. I stopped drinking alcohol!
I spoke to my brother and told him I was going to kill the cancer with juice. My brother is a bit of a petrol head,  a motor bike enthusiast when he wants to be and he has always followed Barry Sheene.
He listens to me rambling about Juice, then tells me 'that's what Barry Sheene did, used juice to fight his cancer of the oesophagus and stomach, but died in 2003'. My brother doesn't say much at times, but he said a lot in that sentence.
I decide to do the Juice, have my vitamins, drink my wine  and have the chemotherapy if I needed to. I really do want to live! after all I have holidays planned..............but that's another blog.

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