The Rogue Node Part II

A routine Oncology review on 19th January, with ‘the man himself’, takes me on a change course in the sequel of this pesky rogue node story. 

Dr Knight-In-Shinning-Armour, seemed a little frustrated that I left my last appointment with his registrar confused about the node and language used. Dr KISA, like his registrar was not worried about the changes noted in the last CT and explained that this minimal difference in size could be due to a matter of a breath taken in or out, which can stretch a lymphnode’ during the CT examination. He  showed me the images of my initial CT PET scan and the latest CT, whist he was exploring his thoughts and confirmed to us both that the node of interest was the same one that showed up as a ‘hot spot’ on the PET/CT initially.  

Dr KISA explained that the node it self will never disappear as it’s part of my own body’s defence lymphatic system, a kind of a ‘suck egg’s’ moment’ but nevertheless a very helpful perspective check to focus the mind on the key to the matter, which is what’s happening inside the rogue node. 

He seemed confident that the treatment had done it’s thing, that there is ‘NED’ and that I have myself a ‘stable’ node, Yay! Though having felt the ‘node’ for himself and deciding it was very accessible, Dr KISA has made a referral to Dr Khan for the node to be removed and analysed to determine for sure what is going on at the core of the node.

I’m now waiting for an appointment to progress this and in the meantime life goes on around my treatment routines. It's been quite busy period for appointments. This has monopolised a lot of my time, but this should settle soon so I can reclaim some time for non cancer related mischief. There was an echo cardiogram on Monday 22nd January and I know already that this has raised no concerns. 

I’m writing this post hooked up to my 10th Cycle of H&P combo and I am feeling some what pleased with myself that I remembered to apply the anaesthetic cream to my port area before I left home and also to take my chemo book. I usually forget both, and usually get told off ‘in a nice way’ by the chemo nurses. Remembering medications remains  work in progress! 

Lately, the sessions themselves usually start with difficulties in accessing my port and so delays in administering my treatment.  Today I had three nurses have a go and six attempts at inserting the needle device (Yay for remembering the anaesthetic cream). This led to  a two hour delay from my arrival at 9.30 before the start of my first treatment .

Christian was the last to try, and I congratulated him with a 'whoop whoop' and a promise of a reward sticker and a cup cake on my next cycle. He was also met with a round of applause from those around me alert to my situation.

                                                                                     Yay for Christian !

To be fair some of the delay today was about my infection makers being up and needing a Dr to check out my sore throat. It turns out I have a viral something or other that thankfully did not prevent me from having my treatment today.

I now come to the sessions alone and there are plenty of familiar and friendly faces to make the whole affair pleasant  enough. The ‘tension’ I have previously experienced in the chemo suite, seems to have disappeared creating a more pleasant environment. I appreciate that a lot. 

I was delighted with the ‘Lewis Foundation’  Care Pack given to me at the Oncology reception, especially as it included some ‘M&S Fruit Sherbert sweets’ Yum!. Just another little touch, a thought that brightens the day.

Dee, a lady I met 3 or 4 cycles ago, also came in with some rather cute knitted Cadbury’s easter egg covers for me to use for my fundraising  efforts. Yet again I am amazed by the warmth and generosity that shines through the people I meet, during what is probably their most dark and challenging day’s.  I have decided to use these for a #BFN fundraising event and I will blog more about this soon.  

That’s all for now guy’s, but I’m working on another post, so keep a look out !

The Rogue Node

So today, on 5th January 2017, I received the CT scan results from one of Dr Knight-in-shining-armour’s registrars and I am kicking myself for not remembering his name because he was awesome in explaining the results that have rather perplexed me!

I shall call him Dr Awesome for now and what he told me threw somewhat of a curveball in my direction, in terms of the understanding I have of the happenings in my body with this blasted pesky cell.

Ruth, the metastatic Breast Care Nurse (BCN) was also present during the consultation and bearing in mind the whole ‘NED/remission’ thing I blogged about a couple of days ago, the word Dr Awesome used was ‘stable’, and he spoke of a lymph node in my left axilla (to the side of my left breast) that had increased in size by 2mm, clarifying that it had measured 1.7cm in my last scan.  

He spoke about this as if I knew, and of course I was aware that the initial scans picked up cancer in the lymph node there, but I don’t recall any measurement being applied to it and there are no measurements in the initial PET scan report I have.  Given that Dr K had declared ’NED’ in my last appointment with him, I was and still am, a tad confused….. How could there have been  ‘No Evidence of Disease’ if in fact , there was something, as I know now, measuring 1.7cm there! 

Is this because of some sort of medical measure used, or some sort of mistake ? I have been going over conversations with Dr K in my head since the appointment and doubting myself about what I thought he told me. I can clearly recall him being specific about the lymph node in my groin showing NED and then satisfying my probing over the other lymph nodes by confirming ‘NED’. In my mind there is little room for misinterpretation with these words.  

Funnily enough, when I met another of Dr K’s registrars on 29th December 2017, he examined a hard lump that I have started to notice. Not seeming over concerned about it, he decided that we would know if this was more than the scar tissue he suspected when the CT scan report was back. I was supposed to have had the results back during that  consultation , however the Christmas period had delayed the reports and so this was the reason for the appointment today.  

Anyway, Dr Awesome explained that there could be less sinister explanations for the increase in size, such as an infection and a margin of error should also be allowed. I was eager to know if  this was going to alter my treatment plan and It seems that they only consider a review of the treatment plan, when there is a 20%  increase in size. As such the plan is to monitor the 'rogue node' and I am to have a repeat CT scan in 6 weeks time and the results I shall learn on 9th March. 

It wasn’t until I reflected on this all later in the day and with Danny’s mathematical assistance that ‘it’ would only have to grow a further 1.4 mm  to get to the 20% threshold.  I’m truly hoping for a non cancerous explanation, but I will just have to wait it out for now and focus on the plan.

Like I said, Dr Awesome was great in taking me through the information, though I realise now that I left without fully clearing the cloud of  confusion and there is now a list of questions that I hope to have answered soon. 

Besides all of that drama, Dr Awesome told me that I would not need to go back on Letrozole,  and I am happy that I will escape the symptoms of this drug. We also spoke about my return to work plans and with the accumulative effects of the chemo, Dr Awesome advised caution on an early return and this will be receiving a lot of thought over the next few weeks as I navigate the way towards my new normal.   

Todays events have left me with a cocktail of emotions; I am ok, with an undercurrent of uncertainty, a spike or two of fear and a rather large splash of ‘ FU Cancer’!  

13th day of Advent

I’m a little late in publishing  this post which was started on 13th December 2017, but never totally finished …. and whilst my intention was to start a fresh and concentrate on a new year update, I thought it wasteful of the thoughts and moments I captured when I started to compose this update during my very last chemo. So this post , finalised today during my 9th cycle of Herceptin and Pertuzumab, will update my journey with events leading up to my 45th Birthday party!

(As written on 13/12/17)

Behind the 13th door of my 2017 advent calendar I find the 8th and the last of the Docetaxol treatment that began way back in July .  Today I say 'toodle-pip' to the chemotherapy component of my treatment plan. It’s been ‘emotional’ and I’m glad I’m in a position to thank it unreservedly for obliterating those ‘pesky cancer cells’, but as the cause of most of the grotty and embarrassing symptoms, It can well and truly jog on now as 2018 is waiting for me! 

I’m writing this post all hooked up to my final treatment and having noted an absence of a medical update on my blog since the end of September, I wanted to recap on that for my own recollection and reflection but also because I’m aware that I have forgotten to update people that have been keen to know how I have been doing.  Having totally forgotten to arrange a lift and company for this chemo session (forgetting happens a lot), the setting was perfect to concentrate on my update.

As you have probably figured, the portocath was  fitted successfully on 2nd October and I am relieved to say that there have been no adverse reactions since the execution of Chemo #5 on 9th October.

‘Portocath’ day it self seemed pretty routine and all seemed efficiently executed, albeit a conveyor belt type of experience, that is characteristic of some of my treatment processes. Thankfully there were some delightful staff that injected the human touch in to the affairs of the day, so I was able to leave feeling like ‘Suzanne’ and not some sort of processed object. 

Rob Hicks completed the surgery and when I queried the use of general anaesthetic, he confirmed that he preferred this because there could be unpleasant aspects that may cause distress, and so I was more than happy to take his advice on the matter. There was a lot of waiting around at the beginning and having been dropped off early by Danny I found some mischief with ‘Vivian’ who made her 2017 debut on portocath day. I wear ’Zara’ my new go to wig in a bun and so rather uncomfortable when lying down. So Vivian saw me through the op and she even got a compliment from a nurse in recovery, who was keen to ask about my 'highlights' and was completley shocked I was wearing wig.

                                                            Mischief with Vivian

Since this time, there has been chemo’s #6 and #7, 3 oncology reviews, a CT scan, the 4th anniversary of my primary cancer diagnosis on 24th October, as well as the birth of my Grandson Jonah, Reuben's 2nd birthday and my 45th birthday party.  

Happy birthday Reuben 

The secondary diagnosis has  made the occasion of the 4th ’cancerversary’ somewhat of a mute affair and hasn’t inspired in me, the same pause for reflection as it has done in the past. I had approached it previously from a position of having been cured with overt sense of celebration, now it is more a moment  for measured contemplation and fierce determination. 

There have been some changes in the way that the nurses are running things and I have felt tensions within the chemo unit which has not always lent it self to the most ‘calming’ of experiences.  

I arrived for Chemo #6 on 3rd November armed with home made ‘blue’ cup cakes for the nurses, in celebration of the birth of my Grandson Jonah who was born on 30th October 2017. 

Round 6 of chemo was in fact supposed to have also happened on the 30th ,  but it had been pushed back by the hospital, as if by an act of god’s grand design, that this particular day was to be marked in time and reserved only for the wonderful news of the safe arrival of baby Jonah. The delay also meant that I was at my best  for Nanny’s first introductions with Jonah on 2nd November.  

Unfortunately, I also had myself a little melt down during Chemo #6 , when the nurse was trying to convince me that it was my last chemo. After explaining the treatment plan, the best I got was ‘well computer says it is’ … my filters were well and truly down and it was only when I asked whether she thought I was lying that there was any shift in trying to clarify matters.  

I left that day with nurses blaming other parts of the service for not updating the system , which meant that my appointment for my next chemo could not be made. Whilst there was a glimmer of acknowledgement for the difficulties this left me with , I was given a list of things I could do and people to contact about it all (aka FOBBED OFF),and was told that I wasn’t the only patient experiencing this and that this was just the way that it was. 

This it seems, was meant to  appease me, but it just fired me up and I ‘delivered’ some feedback in terms of the unhelpful criticisms that had been directed by nurses towards the Oncologist who hadn’t made the changes on the system, and offered suggestion for changes and a patient led process.  I guess what I was after was a confidence that as a service, the departments had a handle on my treatment plan instead of creating uncertainty for me, with criticisms and division of blame when I was at my most vulnerable. 

Anyway, with that melt down out of my system, I’m glad to say that composure was soon restored when I got home, after all the focus a grandchild gives, makes everything pale into insignificance. It was for sure a testing chemo round #6 which also saw a rescue from a dear friend Tracey and her husband Rod, who collected my GCSF injections from NGH 3 days later having been sent away without it. 

The effects of the chemo’s have been accumulative, with each chemo there has been the usual and grotty predictable symptoms I have written about before , but a more intense manifestation of the fatigue, ‘Dory’ moments and the emotional elements.   

Every day life goes on despite all of this cancer treatment crap, and this has required more resolve and that little extra effort to navigate mainly  within the first 7-10 days of the cycle. Living alone, I have learnt to let go of some of the high expectations I have of myself and just accept for example that housework can wait and bins will be put out for collection when firstly I remember, and secondly when there is energy to spare! And do you know what !!! ……my world has not collapsed around me, despite the dusty coffee table and overflowing bins… there’s certainly a different pace and approach to these tasks , one with less pressure on myself when my priorities have been needed elsewhere.  

At least my last chemo marks the end of some of the symptoms that hinder my routines and so I know I will start getting back on track with some of that stuff! I have however been lucky with the support of Tracey who has developed a new found assertiveness and persistence with me, when insisting on popping over meals, shopping and changing of my quilt…. Tasks she knows I will get done eventually but wanting to make things easier for me! 

The 17th November saw a most marvellous outcome to my oncology review with Dr Knighton. I referred to the results of my CT scan in my last post but without some emotional content and reflection. I went to this appointment  accompanied by my friend Mary, but received the news from Dr Knighton alone and was glad of the opportunity to digest the good news in my own way. Given the previous positive scan results, I went with high hopes of this scan, albeit with an undercurrent of doubt and ‘scanxiety’, which is a palpable reference adopted by the cancer community to describe the feelings experienced between scans and results.

Dr Knighton seemed in obvious ‘delight’ as he told me there was ‘No Evidence of Disease’, which I learnt is referred to as ‘NED’ in language used  in the cancer world.  He used the word ‘remission’, which I readily accepted, although since this time I also learnt  through  on line secondary cancer forums, that there is inconsistency among Doctors with the use of this word,  with some reserving it for patients with longer period’s of NED than I have.  This is something I will probably debate with Dr Knighton as an intellectual curiosity, however in the mean time I feel rather smug regardless of the words. 

I faced the results with a composed ‘dumbfoundedness’ and I appreciated the  few moments I had alone , before the jubilant reactions it was to go on to elicit in my nearest and dearest.  I was sure to wait until we had walked further down the hospital corridor to tell Mary. Being one of my chief cheerleaders, my good news is always met with her encouraging ‘woop woops' as it proved to be on this occasion. Lol!  

Mary in the bunny ears

My reaction was more of a composed satisfaction , these day’s news like this doesn’t seem to evoke the big YAY’s in me it once did, as if in provoking ’it’ would antagonise the pesky cell to muster and blight me…..How ridiculous hey , but never the less,  I am very glad of the Yay’s from others .  It makes me appreciate the significance the information and so keep those Yay’s coming. I remembered telling my brother Nick, and the broad smile on his face and the hug I received was priceless and fuel for the soul. 

                                                                                      Nick and Reuben 

I am due to receive further CT Scan results on 5th January so get your YAY’s ready!!!  eeeek!