Borderline Phyllodes

I've just been reading your thread and when I got to where they've rescheduled again, to the 11th I just exclaimed, "Oh, FFS!" and now my husband's looking at me funny. You poor thing - I'm not surprised your BCN looked embarrassed. The way you've been messed about is awful. It's not just cancer that's stressful, having surgery - any surgery - is stressful. Quite apart from the fact that you can practically see your tumour growing. I don't imagine it feels very benign at all. I'm sorry you've had such a rotten few weeks. I shall be crossing everything I've got that it all goes ahead as planned. 

Hi 

Without this forum, I'm sure I'd have been a complete basket case by now, so thank you for being that sane, listening and empathetic voice reaching out.

I think I just needed to vent myself a couple of days ago, and, unfortunately it was a day that left me totally drained both mentally and physically, but I'm back to some old semblance of 'me' now - methinks?   Sense of humour is back and I've told my son not to put me into a rowing boat after the op, I'll never get back to shore.  Although saying this, when I asked the surgeon, jokingly, if he could do something about the other wrinkly boob, he had a complete sense of humour failure and told me I could come back at a later date for a bit of a breast lift .... no thanks mate, if only he knew I'd been tempted before my clinic appointment to draw a four leaf clover in biro on the skin around my lump.  Well, it is a phyllodes after all.

Had my physical pre-op assessment yesterday and passed with flying colours, including another ECG, (I did mention I'd already had one) but the practitioner had a list of checks to tick off regardless.  I then had to run through everything again from the telephone assessment call and I could see from the monitor, my case record contained the uploaded results of my previous ECG and Echocardiogram.  Bonkers doing the same ECG test twice, but at least they know I didn't send a doppelganger to any of my cardio appointments!

Roll on Tuesday and my drive through PCR test across town ..... can't wait to see what fun adventure that generates.

To clarify one point I made which may have been a tad confusing and really with my professional background I should know better when it comes to the written word!  Anyways, I digress; our local NHS trust provides healthcare from a number of aging sites, with the main infirmary being the acute site where A&E/emergency/critical care services are run from, with the other sites providing more specialised treatments.  As it stands, those deemed to be a surgical/anaesthesia wise high risk when undergoing breast operations, are admitted to the acute site where there's a risk of catching Covid and the new 'toy is located.  So, due to pandemic, those deemed to be low risk for surgery/anaesthesia are being treated at a separate site, whereby only those who have been PCR cleared are admitted.  Which is where, I am supposed being admitted to on 8th.

I worked in IT for the NHS for two years and bear witness to the absolute, total commitment from frontline staff, despite the working limitations and I could write a tome on how to remedy for the postcode lottery that is healthcare, but recognise this forum really isn't the place.

Thank you once again for taking the time to reply, it means a great deal in what seems to be a lonely place at the moment.

Hi

Thank you for your kind and understanding commentary. 

This forum is really helpful in reducing the sense of being alone, travelling what has been for me a very bumpy road, full of puddle filled potholes, although I see myself as being very fortunate, when I read the personal stories of other members. Once, the Flipping Flump is gone, there's not likely to be any further intervention, only regular monitoring.

While you feel yourself to be more fortunate than some other people, that doesn't mean you don't get to feel frightened and/or frustrated too. A little venting/falling apart/fit with legs up is good for us occasionally 

Hi

I totally agree with all the points you've highlighted so eloquently.

We ALL OF US, are human beings, with emotions and sensitivities, we are not collection of symptoms.  Medics may see hundreds of cases per year, but each one of those cases is an individual with their own unique set of circumstances.  Kindness and diplomacy makes a huge difference and just because there's a box of tissues handy on the desk, it doesn't confer the right of any medic to diminish a patient's feelings.

I will be using PALS and the health ombudsman, should this pigs ear get any worse, but I shall have to be careful as to how I approach things.  I raised a query with my MP last year about healthcare inefficiencies and she went on to direct it to my local health trust who, then, (based on their reply), very evidently went into 'close ranks' mode, which made me angry.  She'd dodged my question to her!  Hence, I've a slight reluctance at the moment, to rock the boat. 

Excellent - you've really made me smile.  

Thank you.

Regarding writing complaints. I put in a formal complaints at one point. I wrote it, then let it sit for a few days and asked someone I trust to read it with a critical eye, polished it a little, and only when I was certain it was focused on the issue and not on my emotional response to the issue, I sent it. They then took a while to respond. When the response came I was happy with a lot of it, but they skirted around something, so I emailed them again, highlighted that point and asked for clarifications. A second attempt to dodge the issue or perhaps not to leave a paper trail ("can we call you to discuss?") was met with a soft chuckle and a polite but uncompromising email response. By then they may have reaslied I was not trying to go after anyone's neck but was really focused on the issue, so in the end they told me what I needed to know, which was solely for my peace of mind that a certain failing would not be repeating itself should I need to go back to that particular department.

Regarding being people rather than a collection of symptoms, you probably are familiar with the term, "compassion fatigue." Seems some of them develop that out of sheer stress and a too demanding setup, but I am equally certain that with some it is purely a matter of someone's rotten character and unwillingness, or inability, to truly see another person. 

In any case, my thoughts are now centred around wanting to hear from you after the 8th that surgery went ahead as scheduled, how things are after surgery, what pathology has to say once they come back with answers, and what the medical team has to say regarding what's next and what they are predicting in the long term.

Hi 

Just a quick update.

All went ahead as planned on 8th and I'm feeling remarkably well, with no painkillers so far today and its nearly lunchtime.  The PICO dressing is making a difference, I'm sure.

My expectations were far exceeded in terms of care and kindness on the day, but I'll cover that another time.  Needless to say, I cannot thank the medical team enough, from admission to discharge, every one of them were fantastic.

Appointment in two weeks for BCN to change the dressing and back on 26th for results.  Fingers crossed xx

Thanks for this! I have been wondering, but figured I'd let you update when you are ready

I am relieved you have finally had the surgery! Also, great to hear you are doing so well 

I'd be interested in what pathology has to say, and what the medical team has in mind in terms of any further treatment, if needed. 

By the way, what type of surgery was it in the end?

I’m glad to hear that everything went well.

Best of luck with your results.

Daisy53