The Rogue Node Part III

I began arranging my thoughts and tapping away on my lap top for this post a while a go, with no intention of publishing it before my oncology review on 23rd March 2018.  I had become somewhat ‘spooked’ from the anticipation of the CT scan results that I would receive at this appointment. This was written as a trusted means of managing the dose of anxiety I had whipped up for myself, and without having had the outcome of the appointment.

You’ll recall that my Last CT scan in January, the ‘rouge node’ in my left axilla received some attention. Whilst the behaviour of the node was not a  huge concern for doctors, this did leave me with a slight residue of concern. So, because I had then been finding the node increasingly more prominent to the ‘touch’ and because I was now ‘seeing’ the node as a slight contour on my skin, a wave of  panic was beginning to emerge. 

‘The thing is’, I had been putting my body through some fitness training since the January and there have been changes in my physique because of this, so I very much wondered, and hoped, that I could feel ‘what I could feel’ because my body had become much leaner in that area and not because the cancer was growing/spreading. 

I had also been experiencing a deeper ache in my joints and bones and whilst this is a known side effect of the H&P targeted treatments, the specific pains around the left shoulder and neck and head aches had my mind boggling with speculation. Of course it was possible that I had just overdone it with the  increased physical activity thing and this was a reasonable explanation for the disabling bouts of fatigue I had experienced.

With the tangible signs and symptoms before me, I could quite rationally justify my concerns, but because there was also a logical non cancer related explanation, my over alert mind, well, it just hurt !

The over processing of possibilities and implication’s played out various scenarios in my head and I came up with plans to cover every eventuality. I rehearsed conversations I was to have with my loved ones if the news was not good. I even stopped myself buying  a pair of Wellies I had been coveting for rainy day dog walks, for fear that if the cancer was rearing it’s self, I wouldn’t be around to need them or for that matter afford them!

Surely fate wouldn’t be so cruel as to sabotage the exciting year I had been busily mapping out for my self, whilst navigating myself out of an exhausting  2017!  With the arrival of a grandson  to bless my life, a pending house move and dream holiday on the horizon, denial had become a ‘friend’, and fear of feeling let down by others stopped me from taking my concerns specifically to anyone. It was much easier to ‘mention’  it  when a face to face conversation flowed in that direction, but other than that, going solo was deliberate.  

'Knowing' what is happening in anyones world is not the same as ‘understanding’ people’s experiences, it’s affects and the significance of the things people say and do.

I knew the CT scan results would soon enough play my hand. At the very best I would return to the rhythm of ‘my new normal’ and readers would gain a ‘real time’  insight into the ‘wobbles’ of those ‘living with’ cancer, and at the worst we would know that my treatment had stopped working.

I felt equiped to handle either outcome, and I knew that there would be reasons to feel encouraged if the worst was realised, as there are other treatment protocols still available to me, however the prospect of rearranging my life plans AGAIN to accommodate further active treatment felt depressing. 

I now write  from a position of knowing the outcome of the CT Scan and I am relieved to say that I have captured that insight without my worst fears being realised…. So a win win don’t you think! There have been no changes since my last CT scan and Herceptin and Pertuzumab are doing their job! Yay! 

When I first noticed the lump in my collar bone, that led to the secondary diagnosis, I had this distinct sense of ‘knowing’ that I was in trouble, however this time, because of the palpable symptoms and rational interpretations I simply did not know how to call it. 

Dr Jarrall confirmed that the change in my physique was the reason that I could now feel and see the ‘node’. Seeing from my face that I had doubts, he talked me through scans and for sure, I could see with my very own eyes that I was leaner.  With some humour now injected into affairs, Dr Jarrall and Ruth Fox, BCN, soon congratulated me on the CT evidence showingthat my PT training was working! 

                                                           March 2018                Jan 2018

So, with the immediate worry out of my way, I called Danny at work and explained the whole thing from start to finish, feeling quite relieved that I wasn’t having the ‘other’ conversation with him. Our call led to lunchtime arrangements for that afternoon and by the time we met up I was the proud owner of a pair of wellies, no longer just of  practical significance but a symbol of defiant smugness in the new knowing that I’ll be getting good wear out them!

’Spidey Senses’

Thankfully, I now have the 12th cycle of H&P treatment under my belt, but for a moment there, I thought this was going to be suspended. eeek!

I returned from my ski break to an appointment letter from the hospital for an echocardiogram. So, I usually have these every 4 months due to the potential effect of the treatment regime on my heart, and I was a tad surprised as my last one  had been only 4 weeks previous. Convinced this was a mistake, but with my ‘spidey senses’ placed on heightened alert, I contacted the hospital about this rather unexpected appointment. 

 I have been quite fed up with the tooing and froing from the hospital lately, so I was keen to avoid an unnecessary trip, and the echo department helpfully agreed to look into the matter. Whilst the department contacted my Oncology Team and dealt with the query swiftly, they were unable to offer an explanation as to why the appointment was necessary, just that it was requested after my last Oncology review on 9th February. 

Ok, I admit that my first ‘unsaid’ reaction was that telling me to do something that makes no sense was completely ridiculous and a waste of my time and NHS money, however the echo department were clearly not going to/able to tell me anymore and so they were spared my exasperation. I did however, continue with my search for an explanation, at the very least to avoid an unnecessary journey to the hospital, but essentially to quell some worry that was beginning to build.

Dr Knight-in-shining-armours secretary, duly told me that  there was no mistake and that I had been called for an earlier appointment due to the ‘ejection fraction’ levels being below what is acceptable to continue with treatment.  I remained confused and the fact that I had treatment since the echo, concerned me , however It was agreed that  would have the echo on 28th February and direct my questions to the oncologist on 2nd March.

I hadn’t experienced any symptoms that were out of the ordinary, though my mind seemed to be manifesting symptoms with every twinge I felt in my body and almost  ‘convincing’ myself that there was now something wrong with my heart function.   I was of course all over ‘google’ about the possible implications and had reached out to my peers in the Young Breast Cancer Network site for advice. 

I was just happy that I had an explanation for the appointment and glad that I didn’t have to wait long for the appointments. During the echo, the echocardiographer confirmed that my ejection fraction level was 71(good) and that my heart was ‘working beautifully’.  Both relieved and confused by this, I went to the oncology review armed with a list of questions. Most of these questions however became irrelevant, when I was told that it had all been a mistake and that the concerns had been about another patient!

It seems the oncologist had identified the error and had cancelled the echo referral, but that the IT system had already generated the appointment letter and suggested that the secretary had not looked at the records beyond the referral information.

Some of those I have told, speak of this as worthy of a formal complaint. They would of course be right, however in the spirit of ‘choosing my battles’ well, this is one I have decided does not require any more of my energy.  With my ‘exasperation’ decorously conveyed, I was pleased there was an apology and acknowledgement of the anxiety caused. I actually feel I escaped lightly compared to the other patient who does have heart problems and will have experienced delays with her echo.  

It was all a rather peculiar states of affairs…..that quite frankly I could have done without,  but I’m glad ‘my spidey senses’  averted a complete spiral of anxiety.