The Cancer Caveat

Since my last update there have been some  rather happy happenings and experiences in my world and I’m pleased to say there’s more mischief on the horizon for me too !  

Through the dark days of Chemo, I made a number of decisions and plans that are now coming to fruition and this feels quite satisfying.  

In January I was feeling physically and emotionally broken after 6 months of chemo treatment and with a lifetime of uncertainty, side effects and targeted treatment ahead of me , I knew then that I would be thanking myself later for making such plans, however not realising until now how fundamentally important those plans were to my ongoing emotional wellbeing. These plans have not been without their stresses but they represented hope that I needed. 

At the end of March I sold my house and moved with Reuben to live temporarily with my friend Julie and her fur babies, Cassie (my favourite), Freckles (Julies favourite) and Oscar (chief head bumper) . I am still there waiting patiently for our ‘forever home’ to be built and made ready for me and my lil’ love bug at the end of July. This is 4 weeks away now and I am beyond excited!  

On the 19th April I started out on 3 week trip to Borneo, Singapore and the Maldives, all squeezed in between treatments ! I travelled alone as part of a tour  of 7 in Borneo and went completely solo in Singapore before meeting Di at the airport for R&R in the Maldives!  I had wondered if I had ‘bitten off more than I could chew’ , but the whole experience was so emotionally enriching, and I was able to enjoy it all the more because of the forethought to get the help  from Matt my ‘coach’, to recover some strength and confidence following treatment.  It was through Di’s invitation to the Maldives that I found the opportunity to create this trip of a lifetime and this ‘tussle’ with destiny that I’m having, made the experience particularly relevant.  

As soon as the holiday was over, I returned to work on a phased return after 12 months away. It’s still early days’ , however I have made a strong start and I don’t believe that I would have been able to achieve this without  the increase in physical fitness and the confidence gained from ‘ travelling with my eyes wide open’, being tuned into people, their cultures and absorbing the sights, sounds and smells. I have been realistic about the side effects of treatments and so I’ll be working  4 day’s of week for now.

In May I was also introduced to my newly born great nephew Oscar! I can’t begin to tell you how it felt going to meet him for the first time. I was eager to congratulate my niece, Melanie and Tom for producing such a cutie, but then to be handed said cutie, as if congratulating ‘me’ for becoming an Aunty … well, that was very special and I’ll always remember that.  Thank you x

My experiences have also  inspired me to create a charity called, living with living well, that seeks empower women with secondary breast cancer , to reclaim, improve and maintain their emotional and physical wellbeing. I’m very excited about it all and I’ll be blogging more about this soon.

Well, there you have it, if you were to ask me how I am, I would say with confidence, ‘I am good, thanks for asking’ and I would mean it and love that you have asked me. 

BUT with Cancer there is always a caveat. Those wonderful, wonderful things that are happening do not cancel out the challenges of cancer, they coexist with a massive part of my life that isn’t ‘ok’, some parts directly related to cancer such as the daily physical side effects and others that are complicated by it. 

I don’t always find it easy to say that ‘I’m not ok ….. I know this is partly due to the fear of feeling let down . I tend to suppress the true level of these feelings in favour of focusing on the positives in my life , and it’s probably not such  bad thing , but  it can feel quite lonely and is not an approach that I would necessarily recommend to everyone. I’ve never been one for practicing what I preach so inviting me to open up is likely to frustrate you as ‘I’m ‘ok’ thanks ‘!!!  

With so much pressure from others to ‘look at the positives’  this can feel very isolating and my advice to those supporting  friends and family with cancer, is to  check in now and again on the not so good bits, and don’t always accept the instinctive  ‘I’m ok’ at face value’.  That’s not to say you should persist and make nuisance of your self, but I have found that when I have not been open to discussing the rubbish times , it has been comforting when I have ‘felt’  someone knows I’m  not ok and cheerleads from the sidelines. My friend Gill is excellent at this …  thank you x

Anyway , that was quite a long winded preamble to some not so great medical news.  You may recall  from previous posts that I was being referred to have the ‘rogue node’ under my left arm removed , well after 5 months of waiting and chasing for an appointment ,  I was finally seen by  Mr Khan on 17th May . He was not happy about removing the ‘node’ and expressed concern  after a physical examination that  my cancer had progressed. 

Because of the feedback I had about there being NED, this was a surprise,  but not a surprise really if I think of the changes I have noticed.  Mr Khan did not agree with Dr Jarrel , in terms of me being able to see and feel the ‘node’ /scar tissue because  I had toned up.  

By the time I saw Mr Khan, the  lump on my neck, the one that alerted me to the secondaries in the first place, had also become more prominent by touch and sight, and he certainly wasn’t sitting on any fence when he declared that he thought that the cancer had become resistant to treatment.  With Herceptin and Pertuzumab classed as a wonder drug combination , I was quite deflated that the cancer had become resistant so soon. 

The mortality thing came sharply back Into focus for me and I tuned back in to feelings of loss and grief for my loved ones ….. all of course , whilst concurrently experiencing the great stuff in my life, such as joining the crowds at `Windsor for the royal wedding feeling a pressure on my self to enjoy life whilst I could.   What a mind warp!

So, I returned to hospital the following day and had an ultrasound guided biopsy. I asked lots of questions and from the ultrasound I was told that the ‘cluster of cells’ was not a lymph node, or that the lymph node had been overtaken by cancer cells  ….and that the samples taken looked looked suspicious.  

I received the results of the biopsy on 25th May and  learnt that cancer was found and that this was oestrogen positive. In terms of the next steps, this was  for Dr Knighton to determine and I saw him  the following week, (yes…more delays), and he started me on Exemestane , hormone therapy . This is taken in tablet form on a daily basis and the side effects were immediate , though I’m pleased to say that the head aches have subsided.

Dr Knighton confirmed that I had ‘clinical progression’ , which I learnt was diagnosed by what you can see and feel.  Any further changes to my treatment plan will be dependent on the results of the CT scan I had on 18th June. 

Dr Knighton is keen to keep me on Herceptin and Pertuzumab, as this seems to be working for the other areas , however  there are ‘protocols’ and if  the CT scan shows a 20% increase  in size , another form of treatment, that may include chemotherapy again will be used !  Eye Roll!  With only 6 months free from the side effects of the last lot of chemo, this has no appeal ! 

Dr Knighton described how there were more treatment options for me and that it’s a question of finding the right one for me. I hear this loud and clear , though the fact that there has been progression so quickly is not lost on me and I am scared. 

I am to receive the results of my CT scan tomorrow  on 22nd June …eeeek.... 

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.

A plan well made

I began writing this post during a spectacular scenic car journey through the  snow covered mountains of the Spanish Pyrenees, travelling from Baqueira/Beret towards my brother, John’s  home  near Toulouse.  I hijacked  John and his family’s  annual ski trip 'again' and whilst l'm feeling physically ‘broken’ I have never felt soooooooo ALIVE.

I won’t  kid you, I had thought myself a little mad (as did others) to venture on with my ski’s after only an 8 week period since my last chemo. The ski break was booked when the plan had been to finish chemo in  October 2017,  which would have given me more time to recover from it’s physical and emotional side effects and acclimatise to the ongoing effects of Herceptin and Pertuzumab. 

It was in any case an act of sheer defiance in the face of the secondary breast cancer diagnosis, that I booked the flights in the first place. I knew that at the very least that I would be spending some quality time with my family and at the most that I would be enjoying some lovely ski runs with them… so it was always a win win situation for me, though enjoying some ski runs with my nieces was my ultimate goal and thankfully this is what indeed came to pass……

Having plans and making plans are affairs of mainstream daily living, and for me and those living with an incurable cancer diagnosis, crucial to managing the uncertainty of our situations. A secondary diagnosis can have a paralysing affect on ones mind in terms of making plans, whether they be short or long term ones.  Early on in my primary diagnosis and then early on in my secondary diagnosis there were often times when I would falter in making plans in case I was, for example, not well enough. All relevant considerations for sure, but I found it suffocating to exist without plans and not having things to look forward seemed a bleak existence.

I regularly swing from a from a position of great caution when making plans to launching myself in a planning overdrive….I sometimes  exhaust myself physically, emotionally and probably annoy the hell out of others with my over planning. This usually happens when I become frightened with uncertainty and try to cram in as many moments as I can, particularly with my loved ones.  During these times I appreciate those that are in tune with the cramming thing and who encourage me along.  I know I'm not about to ‘pop my clog’s’ anytime soon but taking a leisurely approach to planning feels 'at times' that I am taking things for granted and so that may explain the whirlwind that is ME!

As for Skiing, who knew if I would be able to cope with the physical demands of the activity or  whether emotionally I would be able to engage with ‘the world’. Around Christmas time I was ready to hibernate permanently to Siberia and hide myself from life. I truly believe that having the skiing trip to look forward to with my family carried me through some real tough times.

My current treatment regime means that I experience aches in my bones and fatigue. This is my every day and my new normal. There is sometimes such a strong pull against participating in activities, even small daily activities and I thank god that I was blessed with a determined mind. I knew fitness and  strength was going to be  an issue after 6 months of Chemo and so I got myself a training coach, Matt to kickstart me into action and with some regained strength and  confidence, I have been able to share some wonderful winter time fun with John, Susan and my awesome nieces ,Lucy , Alannah, Grace and Scarlett.   I have had lots of help from them over the week long trip, and I have been glad of Susan’s Yoga training and our daily stretches.

I have pushed my body to the max and I have my self a cold sore, some colourful bruises, lost finger nails and a completely aching body (only if I move) to show in protest ….I will probably spend the next week recovering , though I would not change this for the world as I have thrived with every challenge. There will come a time where my determination and persistence will not be able to override the symptoms of cancer or treatment and so for now , If I can, I will and there shall  no regrets.

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!