So, I made it to Barbados and knew the decision to come was the best , when I was met at the airport by the Ruth & Trevor and was surrounded by their comforting friendship !
I had a crazy run up to the holiday with the winding up of work matters and appointments. I quite literally threw my holiday packing together at the last minute and on DIL's orders I have done well 'so far' in leaving the 'metaphorical' baggage behind!
I'm still waiting for an oncology appointment and to be honest I feel rather frustrated with the poor communication between departments at the hospital, that has meant I have come away with lose ends that are playing on my mind a little ! I'm glad to say that I have left the chasing to my XMIL and hope to have a date soon to settle my mind.
The CT PET scan has now been booked for 9th June and I am lucky enough to have people fighting over who is going with me , so I know I'll be well supported !
I have settled into the Barbadian life quite nicely and have been thankful of the opportunity to catch my breath and reflect over the last few weeks and try and make sense of this crazy world of mine!
So, as promised, the events that lead the re diagnosis is as follows;
It was rather an incidental find during a normal weekday morning on 11th April 2017 , I certainly wasn't looking for anything. I had somewhat moved away from any thought of a reoccurrence and whilst I still experience fatigue , I had been feeling quite invincible actually!
So , I was in bed at the time and the position of my arm and neck seemed to expose a lump in the very moment that my fingers were near, so I could quite clearly feel it. I couldn't see it and for sure it could not be felt when I was in the sitting or standing position unless I dug around!
The original cancer had affected the left boob so having a lump on the right side confused me , however my intuition placed all of my senses on high alert
I felt sucked into a slip steam of thoughts, with every eventuality playing out in fine detail in my mind. Always hoping for the best but bracing my self for the worst.
There have been some occasions over the last couple of years where I have checked out some symptoms with my GP and consultant and undergone some tests . I approached these with rational insight and had correctly satisfied myself that these were symptoms of treatment and not a recurrence.
Don't get me wrong, each time each symptom and each test played heavy on my mind , however the emergence of this lump somehow felt very different.
I waited the Easter bank holiday weekend and after booking myself in with the GP on 18th April 2017, I was immediately referred to the two week wait clinic at Northampton General Hospital.
The GP told me he wasn't overly concerned, but referred me because of my history.
When I called the appointment line for NGH , I was told to contact Integrated Surgery Dpt. directly as there were no appointments available. Starved of sleep, with the worst playing over and over in my mind, I was far from impressed when told by the hospital that they were short of staff and unable to give me an appointment. To cut a very long story short, with persistence I was given an appointment for the 26th April 2017.
I was given the option of waiting for an appointment with Mr Dawson , my original surgeon , however I chose to be seen by Dr Milanowski, as I could see him within a week of my GP appointment. Being seen within the week is pretty good going, but only achieved through some persistence. Goodness only knows when I would have been seen if I had sat back and waited.
So, I met the rather 'interesting' Dr Milanowski for my initial screening. By this time I had noticed another smaller lump in my neck and pointed these out to Dr M. He didn't seem overly concerned and said it was 'not usual' to have lymphnode spread on my right side if the original cancer site was on my left !
I had googled away before my appointment and this was not a surprise to me, but I knew that if something sinister 'was' lurking in that node, that this would mean the cancer was not a 'local' (curable) spread but had 'advanced' (treatable but not curable)
I also showed Dr M some changes to my reconstructed boob. There was some swelling and pitting and he seemed sure this was necrotic tissue from the surgery, however the ultrasound showed no such concerns.
The mammogram of the 'perfect boob' also showed no concern and the ultrasound of my neck/collar bone picked up several slightly swollen nodes and the one in the crease of my collar bone measured 8mm.
The radiographer explained the images on the screen throughout the procedure and whilst the 'nodes were within 'normal' parameters she noted that they looked solid. (not good) . She took a fine needle aspiration of the 'node guided by the ultrasound. The radiographer wasn't the chattiest, however when asked she told me the fluid drawn, was 'cloudy', but she could not be coaxed into what this meant. I already knew that if it was from a harmless infection the fluid would be clear! Eeeek!
The radiographer wasn't trained for the 'supraclavicular' / neck area and she suggested that I would need to be seen by one of her colleagues.
So, Dr M , in summarising the events of the day, told me not to worry and 'seemed' sure it was an infection. Did he 'seem it' because that was what I wanted to see with all my heart, or because he had cause for genuine reassurance??
Mmmm.... I certainly took from him the impression that it was from an infection somewhere in my body. I had been quite well and I was curious to enquire where the infection could be from ... and rather peculiarly, he asked me whether I was married and carried on to say ; that it could be because I use my arm to 'hit my husband'!!
Ok, so with a shared look of 'did he really just say that' with Kath, the breast cancer nurse, I accepted his comments as a major collision of language and cultural worlds!
His intention was clearly to allay my concerns using comedy, and I came away thinking he was a 'muppet', but thankfully a 'muppet' that seemed to know what he was doing !
My inner child was desperate to embrace and cling to every inch of the reassurance offered , however with a profound sense of intuition and the jigsaw pieces falling into place, I adopted the 'Brace Brace Brace' position, feeling never more happy at the prospect of an opportunity to 'eat my own words' and have my intuition proved wrong !
Well, I didn't get to 'eat my words' and neither do I feel smug that my intuition played out .... I don't even feel imperious that Dr M 'kinda' had to 'eat his own words' on 5th May 2017 when he told me, with Russ be my side, that I had advanced breast cancer.
Dr M's heavily accented and sometimes broken English language meant that the significance of what he was sharing was mostly lost in translation , but I got the gist ; 'advanced'... 'treatable' ..CT Scan.... chemo... radiotherapy ... neck specialist ... guided biopsy'.
How I felt : devastated, heart broken and desperate to hold my son.
Mr M's announcement was totally lost on Russ (more about Russ soon!) and he only realised the seriousness of what was being said by the swell of tears in my eyes and Kath's look of concern. That guy was clearly struggling with the news, but prioritised me in those moments.
When asked whether I had any questions, my immediate voice was for my son and daughter in law and how I could possibly put them through this again ! I was told that praying was a good option by Mr M! That goes without saying, though not quite what I expected a Dr to say in that moment, but probably another thing lost in translation .
I left the the appointment feeling totally bewildered and knowing the next step was seeing a neck specialist who was to take a guided biopsy of the node.
So there you have it .. all up to date now and a rather cathartic process for me.
