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!

Grace and Favours

When I was  initially diagnosed with secondary breast cancer back in April, the thought had crossed my mind whilst waiting for test results , that my time on this precious earth was on count down and decided back then to celebrate my ‘big’ birthdays in five 5 year increments, instead of the traditional 10, and so began my plans for a 45th birthday party by way of cramming in as many special moments that I  could with my friends and family.

My mum never  quite make it to her 45th birthday and so 45 was always going to be a significant personal milestone for me in any event,  and so the occasion of this particular  birthday was well and truly marked on 2nd December by a most wonderful gathering of some of my most favourite people.

By the time of my party, my understanding and the status of my illness had evolved and so not only was I celebrating my birthday,  I was doing so having had the best of  CT scan results on the 17th November, showing  ‘no evidence of disease’ (NED) in my body’.

Since then, there has certainly been a reduced sense of pressure to ‘live life and squuuuueeeeeze lot’s in while I can’. With a secondary diagnosis creating the uncertainly that it does, I remain a little suspicious of the whole ‘NED’ thing, however the results has put a pause on the ‘count down’ in my mind and has opened up a future that for a time, I felt was going to soon evade me.  

My Son and DIL were of course my guests of honour at my partyand I managed to hold it together enough  during my speech to congratulate them on the birth of their very own ‘golden child’, who was born on 30th October 2017, and thank them for blessing my life with Jonah, my first grandchild.

I have been an emotional wreck over the timing of my re diagnosis because it  coincided with the joy of the pregnancy news, thankfully this is settling with a focus that only Jonah has been able to give me and I am so looking forward to watching him grow and being the best Nanny I can be.

My family tree being what it is, it is such a rare thing to have my brothers at the same celebrations and so to have John, Nick, Mark, Julian and their families at my party was very special. There was just Jonathan that couldn’t make it but he sent his love and  of course, Chris and Andrew’s presence was felt through their amazing daughters Jade ,Jana and Melanie who were there with their loved ones.

Meeting my Great Nephew Caleb for the first time

As for all my friends, it felt like a collision of all of my worlds coming together with both new and old friendships . Life, time, and distance often means that we lose touch , but that night   our special bonds allowed us to pick up as it was yesterday and I feeI totally blessed to have them all in my life. My oldest friend, Viv and my very own source of inspiration was among the guests and took pride of place for the party selfie I took from the stage. 

I had chemo 10 day’s before my party, which I knew meant that I would be just about picking up from the worst of the side effects,  however not quite enough to prevent my 'knickers getting in a twist' over fatigue and the last minute party preparations, so I was relieved when Jules and Bernie, friends that came into my world only a few short months ago , stepped in, out of nowhere really, and declared that I should leave the final preps to them and insisted I rest so I may enjoy my party!  It was purely thanks to them and the their assistants, John ,Tracey and Lauren that I had such a relaxing day and so I was well rested for the party shenanigan’s.   

The function room at the Midland Band WMC ,  was adorned and totally transformed into a ‘twinkling’ party room by the most wonderful decorations, accessories and skills provided by Jules and her wedding and party decorations business  ‘Grace and Favours’…..

I just loved the twinkly corner ‘grotto’ with it’s post box, sweet shop and photo frame area. I had asked party revellers to bring photo’s of our favourite friendship/family moments instead of cards to display and I thoroughly enjoyed reminiscing over the memories. Walking in and seeing it all for the first time was truly a memorable moment. Staff at the WMC even commented how they had never seen the room look so pretty, but it was  the  sheer acts of kindness and generosity  at the core of it all that was the most beautiful aspect of it all.

I must add that the red and gold 80’s inspired Christmas garland hanging from the ceiling had nothing to do with Julie ! I cant believe they actually still make them ! Lol!

As if couldn’t get any luckier that night; I had TWO surprise birthday cakes thanks to Tracey and Gill. Tracey’s first attempt at decorating a cake was a complete winner and Gill’s chocolate Haribo cake played right into my guilty pleasures . Trevors’  delicious rum punch added a favourite touch to the evening … and was worth the  reprimand  from the bar manager for sharing it with my guests!

With Chris as DJ, There were truly some hilarious moments on the dance floor, that I shall ‘emotionally dine’ on for a long time , including Danny leading the conga, dancing ‘ganman style’ with my brothers and nephew’s and taking in everyones happy ‘Hockey Cokey’ faces ! May be the hockey Cokey is what it’s all about!

Thanks to chief photographer Jackie , the essence of the evening was captured in this precious precious video/photo montage.... your best work yet!! 

Greeting everyone was particularly emotional, my face literally hurt from smiling. The hug’s were overwhelming , though with each one of them came a tug of my wig and a pull from the back creating an increasingly high forehead requiring some regular wig adjustments. I’m sure this would have gone unnoticed,  had I not found it comical and told everyone about my wig malfunction! 

My only regret was that  there was  just not enough time to spend with people individually , however everything that I set out to achieve from this party has been realised, bonds have been reenergised, new connections established and plans for 2018 have been made!

I’m feeling well and truly revived by the celebrations after the monotony of recent months.  I can’t thank everyone enough for understanding the significance of it all and making it so special, and truly hope to see you all for my 50th when God willing we will get  to do it all over again!  

Thank you for all the cards, gifts and photo’s  

Getting a grip!

This post is all about getting a grip….. a  letter, a memo  to myself……GET A GRIP SUZANNE!  

You’ll note that it’s been sometime since I posted on my blog and this has purely been about wavering motivation…. The affects  of active cancer treatment mean that it often takes a little extra effort to do even the simplest things and  my ‘extra effort department’ has simply  closed down for business. 

Lately I have quite literally lost my mojo, and it was the  most fabulous wellbeing event run by the Lewis Foundation on 25th November, that has fired up my minds passions from it’s kinders ….. and so today I have decided to get a grip.

Getting a grip is easier said than done, even for the feisty female that I am. I kid you not, these last few of months have been tough in many ways. I have been physically and emotionally challenged as far as I have ‘ever’ been and those that know me, will understand the significance of this statement. This is unfortunately ‘the beast’ that cancer is…..where it is easy to become ‘stuck’ by a word, a thought, a challenge that is usually taken in a stride.  

Thankfully life has also paved a way for an abundance of blessings that have flowed around me whilst this cancer crap has been doing its worst. Don’t get me wrong, I have felt  somewhat chewed up,  spat out  and completely bored by the emotional and physical symptoms of the cancer treatment,  and  found it difficult to ‘sharp tune’ into these blessings, but  never the less, they have been there.   During ‘impossible’ moments I have searched for them and have found them in the thoughts, gestures extended by people, events  and in the ‘centering’ of mindfulness practice. 

Blessings, however, do NOT automatically cancel out other difficult feelings, thoughts or events you are experiencing.  They can co exist amicably when there are reminders of what  there is to be grateful for, but fundamentally there needs to be an acceptance that you are going through tough moments and a need to know your ‘back is covered’.

For those that want to join me in getting ‘a grip’; know that it is ok to lose your sense of direction, just don’t hang around there too long and reach out for encouragements. Those that have been in your life the longest, may not always be the ones that are able to support you in the way that you need sometimes and so scope out the right people that can see you through.  

I have found the YBCN online forums and the friends made through #BFN, to be my personal life line.  This does not mean that our nearest and dearest are letting us down, it’s an acknowledgement that hanging around someone through cancer treatment is not easy and limitations exist in our relationships.  Building a robust network of support around you is crucial to your emotional wellbeing whether you have cancer or not, and you just simply have be your own hero sometimes and lead the way.

There is no doubt that I will be  having regular words with myself from time to time about getting a grip as cancer treatment isn't a walk in the park, and a life long gig for many. Make no apologies for needing to get a grip and know that  being the best that you can be at anyone time is all you can ask of yourself.

WELL DONE SUZANNE, YOU HAVE DONE YOUR BEST, but now time to get a grip and get blogging! 

Dr Knight-in-shinning-armour

Chemo#4 went ahead on the 18th September, where the healing marks on my hand, from a 'reaction' to Chemo#3 attracted some attention. The reaction was slight and hadn't  bothered me enough to let any medical professionals know, so I was quite surprised at the scrutiny it received. 

Thankfully this did not delay chemo, however I did leave with Doctors orders to report any reaction and with a recommendation that I be fitted with a PICC line if there were any further problems! 

I tried to convince the Dr that I could continue to cope with the reaction on my hand and explained that I was desperate to avoid having a PICC line. He seemed to have no doubt that I could , however the Dr explained that this could cause longer term implications, but ultimately that it ‘is up to me’ if I had a PICC line fitted.  

I’ve been hearing the ’it’s up to me’ quite a lot lately which now seems to invoke an involuntary ‘eye roll’ every time I hear it and I try sooooo desperately to hide it. 

In presenting my case and reluctance to have a PICC line, I explained the problems I had in 2014, how I had to be fitted with Groshon and described the impact on my day to day life, all hoping to provoke an exchange of thoughts that would enable me to feel satisfied that the PICC was the only option. I’m pleased to say that the Dr took time to listen, however  ‘It’s up to me’ was as far as any ‘debate’ went. 

Sure enough, little blisters started to appear 5 days after chemo and with the biggest of sighs, I updated the out of hours Oncology service. Whilst no action was necessary on  the Sunday when I called, a follow up call from the hospital on the Monday led to a visit to the assessment bay for fear there was concern, I was experiencing cellulitis.

The Dr who assessed me was happy that my hand wasn't infected, but again recommended that I be fitted with a PICC line as I had reactions following  3 out of 4 chemo’s. The Dr acknowledged my reluctance, but again said ‘it was up to me’, he suggested I speak with my oncology team about it and quite efficiently he arranged an appointment for me that very afternoon. 

I spent the time between appointments on google, researching. I had resigned  myself to the likelihood that  I would be fitted with some sort of line, but I wanted to understand the whys and wherefores. I came a cross a Portocath on my quest for information. I know a few people that have had these fitted and learnt that the portocath is fitted under the skin, less obvious, less chance of infection, lower restrictions on activity levels and basically just less of a impact medically and as I see it, on quality of life. BOOM exactly what I was looking for and I made note to talk to the Dr about this. 

The registrar I subsequently met with that afternoon seemed initially perplexed as to why I had an appointment at all.  I quite patiently explained the events, my thoughts and why I was there, but I could feel my eyes welling up. I was feeling quite exhausted by all the goings on and was deflated by this start to the appointment. I hadn’t realised how on the edge I was of an ‘emotional wobble’, but I am glad to say things did pick up but not before another silent outburst with an involuntary ‘eye roll’ , when the  ’It’s up to you’  moment came.

I was hearing what medical professionals were recommending, however I was stuck on the  ’nonchalant’ , ‘it’s up to you’ approach by professionals, with what seemed to be a  standard, text book route which felt quite detached from me as an individual. What I wanted to feel is that it was a right decision and not just the easy decision.  Unlike the last time I had one fitted, this PICC line will be in for unlimited period time, as I am now on a life time of treatment and it's quite right that I manage the decisions that will affect my quality of life, well. 

Just as I was becoming exhausted into making the decision to have a PICC line, Dr Knighton spotted me through the open door of the consultation room and ‘charged’ in like  a ‘knight in shinning armour’ from  a scene of a medieval movie, with his trademark warm and personal greeting.  

So Dr Knight-in-shinning-armour (lol),  immediately gave a medical term to the ‘reaction’ I was having.  He called it ‘extravasation’.  So there was a word for what I was experiencing, I hadn’t come across this in my research. I had come across things like infiltration, however nothing that gave me the measure of the concern, that my subsequent googling of extravasation gave me….eeeeeek! 

With a hand hold, eye contact  and an “of course it’s up to you” as a preamble, Dr K left no doubt that a PICC line should be fitted to avoid  risk of necrosis and all sorts nasty plastic surgery stuff. He took time to hear about my previous experiences with the PICC and Groshon line, and I asked him about a Portocath. I think I actually asked him about a ‘cath’,  (#chemobrain) but he knew what I meant, and he explained that this was not usually available on the NHS, however under the clinical circumstances he asked his registrar to make a case and refer me on for the procedure and request a favour for this be completed under the NHS.  

Finally, I'd had a fluid conversation and I left with a plan that I was happy with. Things were put in motion quite quickly after that and today I went for my  pre op, so I'm all ready now to have the Portocath fitted under general anaesthetic on 2nd October 2017.

A  pre-pre op cake moment with Jules

There is much to be said for patient choice, at it’s best it has been empowering, at worst I have experienced it as overwhelming.  'Supporting' patient choice is crucial and I would say a skill which Dr K clearly has. You will recall that Dr K presented me with a choice as to whether to continue with chemo or not, and his approach to the PICC or not to PICC , has given me is a measure of his threshold on this choice thing and I feel much better about being left with the chemo decision, as I know that he will ultimately give me a shove in the right direction.

'A symphony in my head'

Tomorrow, on the 18th September, I shall be going for my 4th chemo session and so time for a medical recap as per my usual cathartic enterprise, but also for my wonderful cheerleaders that have expressed recent care, concern and interest in my progress.

I shall start  with the most exciting news about the results of  the CT scan that I had on the 6th August 2017. I wasn't supposed to have had the results until the 15th August, but a chance encounter with Dr Knighton, that very evening, at the #BFN monthly meeting, triggered my request to return to his care and then a consultation/chemo review with him just 2 days later.

I had been growing weary and losing confidence with the lack of continuity/consistency in the care I was receiving from Mr Mosni who was supposed to have oversight of my care. By the time I saw Dr Knighton, I had never even met Mr Mosni and had been seen by several different registrars. You may recall that I was previously a patient of Dr Knighton and knowing what I was missing out on, I felt quite short changed. 

Anyway,  I hadn't expected any results when I saw Dr Knighton on 8th August and so I was pleased he had taken the initiative to chase the results for me, and even more pleased that my XMIL was with me to hear that my results 'were stable'. Further probing for the detail, initiated a  'musical symphony in my head' that drowned out everything but the key words of that moment... 'minimal disease'  and 'cancer is dying'....'  

This was the first CT scan since my secondary diagnosis and I had been beyond desperate to know how I was responding to treatment and  whether I was closer  to that 'edge'. The 'scanxiety' that most cancer patients slip into despite best efforts, was thankfully short lived for me this time and I was grateful of the amnesty bestowed on my wellbeing. Such a shame we are made to wait sometimes up to 2 weeks for results. I'm sure this has a lot to do with a pressurised NHS, however one does wonder whether a  lil' 'tweak'  of the systems here and there would allow results to be delivered swiftly  and allow 'us' some emotional peace at these times. 

Dr Knighton has a particular holistic approach to his care and offered advice about exercise and diet. He was one step ahead of everything and before I even said a word about the malady erupting  all over my face,  he took one look at me, diagnosed me with Folliculitis and reached for his prescription pad.

I had alerted several medical professionals since my first chemo back in July of the sore and  uncomfortable blister like spots that were assembling on my head and face, so was a little annoyed that relief hadn't been given before now.  I was just 'sucking it up', like I do,  as a side effect of the chemo I couldn't do anything about! 

With each chemo cycle the blisters had been getting worse on my face and luckily Dr Knighton was totally in tune with what this would mean for me and seemed as keen to rid me, or at the very least, ease me, from the physically repulsive, uncomfortable chemo induced symptoms, as I was! Not even in the interest of 'keeping it real' will I ever post a photo of this symptom or even venture out without a dab or so of my Bobbi Brown concealer! I'm confident that the cream will do the trick and hopefully  I will avoid an expensive bulk buy concealer shipment! Cancer is expensive!

                                                  Folliculitis free picture 

Dr Knighton also prescribed an antibiotic concoction for the dry infection in my nostrils that  I develop through my cycle, that was making life just a little more 'icky' than it should have been..Just another symptom I had 'sucked up' after speaking with 'disinterested' medical professionals. 

Anyway, the melody in my head continued to play out blissfully, however there was then news from Dr Knighton that brought that 'symphony' to a powerful crescendo.  He told me that he recommends that 'his ladies' continue with the Docetaxol part of the treatment for as long as they can tolerate it. It seems most ladies last up to 10 sessions,  and being the determined person that I am, I would probably aim for 12, which would take me well into 2018 and totally interrupt family, work , financial and life plans.

Dr Knighton explained that the Docetaxol is a small part of the treatment plan and that the Herceptin and Pertuzumab are the main players but he handed the choice to me. So I shall be doing my research and using one of my decision making matrix' tools to make the right choice for me.

Having the choice carries a sense of empowerment but given the ultimate stakes involved, I am totally bewildered and wished I did not have to chose. Surely he wouldn't give me the choice if it was such a high risk? There is no question that I would  carry on if told to, and I would simply make it work on a  financial, career and personal level, however with so much to look forward to in my world, I want to leave the chemo behind, reach my new normal as quickly as possible and participate as fully as I can in the  life that I have.  Lots to think about hey!

The chemo side effects being what they have been, and with some confusion and disappointments in my personal life this cycle has been tough. Nothing that I cannot handle mind you, and as usual there have been the blessings, consequential events and exciting plans coming to fruition that has provided the emotional environment for me to thrive and the faith to believe that I am on track.

Sharing all of this with XMIL was comforting and it was sheer coincidence that she was over from Canterbury with XFIL for Dr Knighton's appointment. They paid a visit so XMIL could  essentially teach me to crotchet for operation 'flutterby blanket' (more about this soon). As XFIL declared; their visit also involved some 'cosseting'. I love this word, a 'vintage' term , probably best known now as a form of TLC .... I'm not easy to 'cosset' despite my a hidden craving for it's perks. I am usually the 'cosseter' but these guy's have the measure of me, they have known me since I was was 14, longer than my own parents and so their 'cosseting' tends to be gently enforced with 'cheeky sneakings' about doing 'stuff' that I'm too proud to let or ask others to do.  You are he best S&R and I'm now open for some TLC!

It is the time of the year when my own mother has been profoundly in my thoughts.  It was the anniversary of her death on 24th August and her birthday is on 19th September and I usually enjoy a comforting remembering day. This year feels very different, she was 44 when she died of cancer and this is the very age that I am now and like her I have my very own incurable cancer diagnosis.  Unlike my mother, I shall live beyond my 44th year and I'm determined to put in many more years at that, however I find the parallels of our stories frightening, never the less, they have proved to be life experiences that have prepared me well and are guiding my priorities for the following chapters of my life.

The symphony of life continues

'Something To Look Forward To'

So , last Tuesday on 29th August  I had my 3rd chemo, and whilst today is an icky and achey day.... my mind and soul have been refreshed by a most marvellous treat from The 'Something To Look Forward Charity' and now I feel I can take on the world ! 

#STLFT  provided a chauffeured punting trip experience, with a most delicious onboard sushi lunch, for ladies from the 'BreastFriends Northampton' (#BFN) support  group, and on 2nd September, I was blessed to have been part of the whole adventure with a bunch of vibrant women!

The events in my world  being what they are at the moment, I was particularly grateful for the emotional interlude of the day. I'm very lucky to have  a multitude of people around me, however the most crowded of places can be the most isolating when  a particular level of 'understanding' is missing and so having moments like these, surrounded by those that 'get it' often does make the difference and so a big thanks to #STLFT and BCN for an opportunity for clarity and perspective! 

The  STLFT charity offers people with cancer and their families, gifts and experiences donated by people and companies. Rutherford's punting company and Sushi and Sticks were our benefactors that day....truly the event was 1st class... made extra special by Ricardo our rather attentive and 'delicious' chauffeur.  We all took somewhat of a shine to ‘Our Ricardo’ that day… some more than others, hey Kazzie!!  He was a  charming young man on his gap year, who gave remark of genuine pleasure for being part of our day, explaining that his family had been affected by cancer.

The sun was certainly shining down on our florickings in Cambridge, with plenty of it to enjoy the 'Sushi and Sticks' picnic on the 'punt', whilst leisurely coasting along and attracting celebrity like attention! 

Leonie, one of the founding members of #BFN pulled the whole event together, organised us all with travel on a mini bus, giving us all an opportunity to chat away like old friends and binge on Jules' stash of ‘pink’ lollipops and heart sweets.  Thanks to BFN there was also a lil’ cheeky prosecco action along the river… !

My friend Mary came a long too, otherwise this was the first time I had met some of these ladies  and my day ended feeling like I had known them all for ever! 

Refreshingly and more significant for me about the day, was the ease in which we  seemed to comfortably drift in and out of guilt free mentions of our cancer stories, whilst enjoying each others chatter on love, life, hopes and dreams, without the social/emotional awkwardness that this can sometimes create.  

No matter how much one wants to or tries,  It is sometimes impossible to avoid even a fleeting reference of ‘cancer/treatment’ in conversations with friends and loved ones.  For me this has been particularly so during active treatments , due to cancers commanding  monopoly on my time, thoughts, physical appearance  and priorities.  I’m more than aware that as a default setting, I try to manage the emotions of others by offering protection from the physical and emotional inconvenience of  my cancer world, and so the respite from this has been the biggest treat of all.

Leading up to my secondary diagnosis in April 2017, I got to a point where cancer was becoming a more distant factor in the tapestry of my life and it was for sure, receiving less ‘air time’ in my thoughts and  conversations. Now that cancer has drawn it self back, without invitation with more focus than ever I am glad that  BNF is now  part of my support system. 

BFN is a relatively new group, so spread the word about their work and certainly do check out STLFT website if you  are affected by cancer or in a position to donate a gift/experience, particularly if your business is in the Northants area.  

Ok, so back to  Ricardo…….and some pictures Lol!

                                                  Fore He's a jolly good fellow!