#NotSecondRate

On the 24^th October I attended the Breast Cancer Care (BCC) Parliamentary reception at the House of Commons where the focus of discussion was increasing the support for people living with secondary breast cancer (SBC).

I was cordially invited to attend due to my involvement in BCC’s secondary breast cancer panel. My role in all of this will be to give feedback on my experiences so services can be developed . I like the idea of that and can’t wait to get started with it all!

I was reassured to hear at the event that there are politicians and professionals in the medical field behind BCC in their mission for change through their Secondary, Not Second Rate campaign.

UK cancer strategies fall short when it comes to supporting those living with secondary cancers, where most of the focus is on those recovering from primary cancers.

We are living much longer with SBC, however treatments and side effects make life complicated and so HUUUURRRAH for  Breast Cancer Care  and their work to help women like me to navigate the SBC world guided and informed.

The agenda of course fits in nicely with my own mission to improve the local support in Northamptonshire through The Living With Living Well project, so I was in my absolute element at the event.

It was my first time in the House of Commons. The building was not as intimidating as I thought it would be once I got though security. There was a magnificent Hogwarts feel about the setting and I wandered  through like a complete tourist along the corridors and halls, fascinated by its history.  

I arrived at the reception with Vicky , who I met in the queue and I felt a little awkward at the start with the whole ‘mingling’ thing , so I was pleased to see Ruth Fox my secondary breast cancer nurse  specialist there. Ruth was there to give a presentation about the work at Northampton General Hospital.

I hadn’t realised how lucky I am to have the support of a SBC nurse specialist. It seems only one third of hospital trusts provide this. Ruth has been so important for me in bridging the communications with my oncology team, being the friendly face of the medical world and providing me with continuity of care.

The #NotSecondRate campaign is seeking to ensure  every person with SBC has access to a nurse specialist like Ruth.  I don't think I fully appreciated until that day the full extent of the issue and it has stoked up that fire in my belly and I'm getting right behind this campaign.

It also happened to be the 5th anniversary of my primary diagnosis. This date always inspires some 
reflection on a life very much changed especially since my own secondary breast cancer diagnosis last April.

Each year serves as a bench mark. This time last year I was well into the throes of a 6 month docetaxel chemo regime, feeling like a zombie, and clinging on to dear hope, through the only comfort I could find and the only certainty in my life at that time, in the pending birth of my first grandchild.

Well, this year, I'm not doing ‘too bad’ actually and I’m looking forward celebrating Jonah’s first birthday on 30^th October with piñatas, pass the parcel and yummy cake.

It sounds a little dramatic, when I recall ‘out loud’ how I felt back then, and whilst my mind set has adjusted, the feeling of dread that I experienced was like no other. Those ‘cancer storms’ do creep back in ‘now and gain’ but today I can pat myself on the back and thank all my cheerleaders for getting me through the year!

My Friend Bernie came along to London with me and we both marked the anniversaries of our breast cancer diagnosis' with some champers at the Shard overlooking the sites of London. We chatted about the new and ever evolving versions of ourselves and decided we have a lot to be thankful for.

Metastatic Breast Cancer Day !!!!!!!!!

Some 'filtered' ramblings about metastatic breast cancer awareness day! 

It’s breast cancer awareness month, there’s  an explosion of pink all around us and what a great platform to provoke discussions, encourage women and men to check themselves and a fabulous opportunity to fundraise for research and services ! 

However, I’m ‘curious’ to discover that ‘someone’ seems to have designated just ONE day in all of the 31 days of October, to METASTATIC breast cancer. 

Medical advances mean that women are living much longer with INCURABLE breast cancer and there is a significant gap in services to support  the many women ‘living with’ SECONDARY breast cancer! 

This is the more ‘uncomfortable’ and ‘devastating’, less 'pink side' of breast cancer awareness. Never the less it is a very real aspect of the disease and as such, is as worthy of the full 31 awareness raising days of October, as the preventing it and beating it emphasis. 

I happened upon ‘Pinkoala’ a Facebook page belonging to Linda Garland, an illustrator and a breast cancer ‘survivor’. She is  illustrating and offering reflections and truths every day, all throughout October to raise awareness of all things breast cancer. 

I have found that Linda's illustrations and reflections convey the serious aspects of the disease in such an engaging manner. She injects some much needed humour into affairs and  she offers a fabulous opportunity for those seeking awareness to understand the realities in 'human terms'. 

I invite you to check out her daily posts.

Macmillan Press Release

With Living With Living Well project officially starting on 11th October, It has been exciting to work with Macmillan on this press release in time for breast cancer awareness month. 

Macmillan funds project to support women living with 
                           incurable breast cancer

Local charity Breast Friends Northampton (BFN) has received a support grant from Macmillan Cancer Support totaling £12,740 to deliver the ‘Living With Living Well’ (LWLW) pilot, a pioneering well-being programme for women living with incurable secondary breast cancer (SBC) in Northamptonshire. 

LWLW will use the funding to deliver eight well-being programmes over a 12-month period, with the intention of shaping services for women with SBC in the future. The support grant, which is the largest given by Macmillan in the area, aims to directly benefit over 70 women living with SBC and their relatives, by improving their quality of life and building a community where they can get support and share their experiences. 

Jo Meftah and Leanne Byrne are both living with secondary breast cancer and have joined the LWLW programme this year. Secondary breast cancer happens when cancer cells spread from the cancer in the breast to other parts of the body, most commonly the bones, brain, lung, or liver. It is usually treatable, but not curable, some women might experience a range of side-effects from living with secondary breast cancer and its treatment. ¹

Jo, 53, from Northampton was diagnosed with SBC in 2012, she said: “When I was diagnosed, each day in my mind was a step closer to death, six years later, with nine grandchildren, four born after diagnosis, I’m still very much here. I’m so very thankful for every minute but it is not easy living under this cloud, there have been some very dark days. LWLW is such a vital support which has long been missing. Hopefully from today, ladies like myself will be given the opportunity not just to live with cancer but to live well with it and thrive by getting a much fuller support network, not only medically but physically and mindfully.”

Leanne 31, from Wellingborough was diagnosed with SBC in 2017, she said: It was a huge shock knowing that the cancer would never go away. My first thought was that I was going to die, and soon. I was told by others with little understanding that I may not be able to do things due to my diagnosis. But you can live with cancer, and continue to do the things that you want to do. Twelve months on and alongside the treatment that is currently keeping the cancer at bay, I am studying for a professional qualification in social work.”

Leanne added: “This is what attracted me to the Living With Living Well programme. A group of ladies living with a secondary diagnosis, wanting to reclaim who they are and to be the best version of themselves, with help and support from each other. LWLW will enable us all to believe in ourselves again, and to reclaim, improve and maintain our wellbeing. To be able to share this experience with others in a similar situation, who know what it is like to live with secondary cancer, is invaluable.”

LWLW identified that there was a lack of support for women with SBC, and that their needs are very different to those with curable breast cancer. The LWLW project will comprise of eight six-week programmes that will be delivered by trained professionals from a lifestyle coaching company to empower women with SBC to ‘reclaim, improve and maintain’ their emotional and physical well-being. The sessions will focus on things like nutrition, movement relating to specific treatment, symptoms and side-effects, improving mind-set to manage life with incurable cancer. The grant will also fund ‘Theraplay,’ which is designed to help families manage difficult conversations and strengthen parent-child relationships through cancer treatment. 

Suzanne Wright, Living With Living Well Project Creator and Lead, who is living with a diagnosis of SBC herself, said: ““I was inspired to create the LWLW project following my own experiences of using a lifestyle coach from January 2018 to recover from chemotherapy treatment and work through emotional and physical struggles. This was a significant financial burden due to the hidden costs of cancer, however I was desperate. I had fallen into a black hole and felt physical and emotionally broken.

My aim has always been to live a fulfilled life; however, my life has been made somewhat ‘complicated’ by the physical and emotional symptoms of a lifetime of cancer treatments and the demands and anxieties associated with hospital appointments. 

When I began to feel the benefits of the coaching on my mind and body throught-out day to day life, I was determined to empower other women like me be the best versions of themselves and this is how LWLW began. You can get in touch with us by emailing hello@livingwithlivingwell.co.uk or visiting our Facebook page @LivingwithSBC.”

Cancer Popcorn Party

It has been some time since I left you knowing I was about to receive the scan results, and the truth is , that the words would just not flow freely when I set to update my blog. With plenty of time to process all the information and it’s implications, it’s time now , in true Suzanne fashion to deliver a pragmatic account of my news. 

So, the CT scan results were not that great, and with the benefit of time and a mindset adjustment, I have decided that they are certainly not the worst. 

As I suspected, the CT scans showed an increase in the size of the lumps under my arm and neck and this in itself ‘did not worry’ the oncologist…though funnily enough it did perturb me!  

It also seems that a lymph node in my chest is having a cancer party, and one which was not there at the last scan.  My lymph node has valiantly tried to do it’s job and filter out those pesky cancer cells , but alas the cancer has overtaken and is growing around an artery. 

In addition, the CT scan results shows ’ Irregular sclerosis of the clivus’  which is a portion of bone at the base of my skull.  It’s unclear how long this has been there, as it was the first time they had scanned that far up since being diagnosed with secondary breast cancer.  I certainly haven’t had any significant symptoms associated with this area. I haven’t been given an assertive  ‘this is metastatic breast cancer’, and the standard medical line is that  ’they are not sure what it is and will monitor it going forward’.  

I appreciated Dr Knighton’s balanced approach, after all  you can’t have doctors freaking out all over the place, however  you don’t need to be a rocket scientist or a ‘google extraordinaire’ to know this is scary cancer stuff….. eeek….!

The appointment on the 22nd June 2018, had been a difficult one ….but not because of the results. I had initially been seen by Dr ‘Numpty’, (not his real name) a locum Dr, and he just would not answer any of my specific questions about the CT report, ie what is the ‘clivus’. Instead of answering the questions I was asking , Dr ‘numpty’ told me  to remain positive, assuring me it was minimal progression and he signed me off for my next treatment of Herceptin and Pertuzumab.

Ruth, my breast care nurse  was with me  and even when she clarified that ‘I am a very positive person ’ and just needed  my questions answered , it was like pulling teeth and we were going around in circles. At one point I asked whether my clivus was in my chest and he said YES!… well of course it isn’t and so this reflects my general experience with Dr Numpty, where language proved to be a barrier.

I was desperate to understand what was going on in my body, but was keen for the appointment to end because I was feeling quite vulnerable and disempowered. Fortunately, Ruth found the very busy Dr Knighton and she arranged for me to meet with him straight after.

This is where I found out that my clivus isn’t  actually in my chest!!!!  I felt quite ‘nauseous’ when I learnt that this was part of my skull….. I thought ‘ok I was gonner’,  though Dr Knighton still referred to CT findings as ‘minimal progression’.  The medical definition clearly isn’t in sync with my own definition of minimal, the cancer seems to popping up like pop corn in random places….. but it’s kind of reassuring… isn’t it ?

Whilst Dr Knighton explained that the progression was minimal, the fact the new lymph node in my chest was growing around an artery, and  because of the area showing in my clivus, this was indication enough that the  treatment regime  wasn’t working. I loved that he deliberated out loud, his concern was if he didn’t change approach ,that the one in my chest could make me too unwell for the next treatment option.  

So my treatment plan was changed and I started my first infusion of Kadzyla on 27th June 2018. Kadzyla is a ‘target’ treatment. It’s a combination of Herceptin and a chemotherapy medicine called emtansine. Thankfully the chemotherapy component is delivered through the Herceptin  so the side effects are more manageable than when I had Docetaxol as a systemic treatment.  

Kadycla is administered at the hospital through my port and in theory takes half an hour, so this cuts down my time at hospital . This is certainly the ’silver lining’ that I can pull out when conversations get awkward with people that enquire into my health news.

I must admit, ‘at the moment’ I struggle when I am offered  ‘silver linings’ by others or well meaning encouragements when I have  ‘ shared my  difficult news.   I’m pretty good at recognising my own silver linings, and I find when they are offered ‘without’ a flicker of acknowledgement or an attempt to understand  the substance of what I have shared,  I feel an overwhelming sense of loneliness and I sense my self shutting down these conversations.  

I’m sure this is about my mind set catching up with the ongoing and ever changing direction that my cancer is taking me. The recent news for sure has whipped me up in a bit of a panic and doubt.  

I am beyond desperate to be well enough, for long enough to ensure that my grandson Jonah has  established memories of fun times spent with his ‘Nanny Dory’ and feel the love I have for him first hand, instead of knowing this from photos. My great nieces and nephews are so young  and so so important to me and I want to be around long enough for them to know their crazy aunty too. In vulnerable moments I feel that all of these things are slipping away from my grasp, so I have not cared much for the silver linings anyway.

Please know, you can feel like this and be ‘positive’… I am living testimony to this, I am in essence ok 'AND' not ok all at the same time ,  being positive has it’s complications when it comes to cancer and life so bear with me.  

I had my second Kadzyla  cycle on the 17th July and ‘I think’ I have just got a handle on the symptoms. I’m quite tired and fatigued and I initially experience some mild nausea and headaches. On a day to day basis, there is always some level of ‘ickiness’ and forgetfulness, however I have no time for this to interrupt my ‘life’ plans. I continue to work, while I can, doing a job that I love, to fund the life that I want and  I am also busying  my self with as many Nanny moments I am allowed and getting the Living with living well project off the ground.

Leading up to my second cycle, I was noticing that the lump on my neck was going down and I was sure that the one under my arm was too… I was quite cautious about getting too excited about this, I wasn’t expecting such a tangible response to the treatment. It wasn’t until I went to the oncology review on  13th July  that the Dr ( I forgot her name … too many oncologists to remember- not happy with lack of continuity and numpty Dr’s- rant over), said that it was wholly possible for the treatment to respond in this way, and so I have quite confidently been telling people  that the treatment seems to be working. 

To have such visual response is comforting , I really can’t feel the one behind my collarbone at all now, and I’m hoping that the treatment is sorting out the unsolicited cancer pop corn parties that I can’t see in my body. 

So I shall continue with the treatments on a 3 weekly cycle and await further scanning in September to see what cancer has in store for me next! 

In the mean time I will be requiring some patience from friends and loved ones whilst I finalise the transition to my for ever home on 10th August, set up the Living with living well (LWLW) project and prepare to trek up Snowdon on 18th August 2018. 

I am more determined than ever to get up that mountain to achieve the goal I set myself back in January and raise funds for LWLW. I have many cheerleaders coming along to make sure I make it. You are all welcome to come along too - check out the LWLW facebook page for information about this… I have set up a Total giving page for the event and if you want to and are able to, feel free to make a donation using this Total Giving Link

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.