Phoenix Rising

The physical and visual thrashing I am about to experience again, has been playing on my mind to be honest, but whilst I wouldn't be so flippant as to say 'I'm not bothered' about the pending hair/lash/brow loss,  I am certainly not  phased by these side effects……... just  'annoyed' I guess, ….after all,  I thought I had left all that cancer crap behind me……….but yes, I know 'I have done it before' and 'know it will grow back' …blah blah blah……  but in the interest of being 'real', the very well meaning reassurances I have had about this fall very short of soothing the lack choice and control I feel I have over this.   

                           

I have been taking a look at photos and memories of the last 3 years, and to see the 'golum to glamour'  transformation  is helping me approach these particular side effects with more confidence…..and in fact this time, with determination of the  greek mythological phoenix kind……

                                  

                                        

                                          This made me giggle !

It was when the brows/lashes disappeared the last time around that I began to look sick and had the chemo' look about me, so this time I have given  Microblading a go. I saw through the YBCN forum that many ladies are opting for this so why not ! 

Katy Allington, beautician was recommended to me and when I contacted her and explained why I wanted microblading,  she explained that the disease had affected her family and as a subject close to her heart, she offers 20% off the price of the treatment for ladies affected by cancer treatments. 

I had the microblading done on 25th June,  just in time to heal before my chemo on the 10th July. I have left it too late for the top up treatment before the chemo and will have to have this six  months after chemo. 

I came across this picture  taken of my brows when practicing my make up before Danny and Becky's wedding in August  2013 and before my diagnosis. 

                             August 2013

My eyebrows never did recover from the first lot of chemo and whilst 'Wonderbrow' sorted that out (thanks Bex), I am so far 'over the moon' with the results of microblading , and hope that when my eyebrows finally fall out, that the  hair stroke's that have been finely tattooed on will camouflage the cancer look ! 

                          

                             Before and After

As for the hair, It's approaching 3 weeks since my first chemo treatment and my hair is rapidly falling out now . You probably can't tell at the moment apart from the masses of hair I'm leaving around me wherever I go. I'm combing regularly to avoid 

the shedding of hair becoming noticeable in public and more importantly so it does not work its way as a mystery ingredient in the meals I prepare! 

I have however, been making the most of  the length of my hair and had been procrastinated over plans to get it cut short and probably thinking I would just get it shaved! 

Just after my first chemo,  I finally popped in to see Chris at Toni and Guy to update him about my diagnosis. With superhuman like powers of intuition, Chris soon had me booked in the next day to have my hair styled shorter. 

Chris and his team saw me through the whole hair thing the last time around, however, that he would even think that this is what I needed, before I even knew myself, then approach it with me, with such professionalism was inspiring! 

I'm loving my new look and I felt so empowered by the whole salon experience that day because It really did feel I was making the transition to 'baldness' on my own terms. 

That day I also met with a Debby the 'hair' lady from NGH and with the help of Mary, I chose a new wig, or should I say that it chose me... it is the perfect colour and I am super excited that it is called 'Zara'.... this is also the name of my 18 month old 'great' niece, a very special lil' lady in my life and can't think of a more perfect name ! 

                                       

Zara and Hugo 

So it seems my 'ducks have lined themselves up' somewhat and I'm all ready to face the next few months without hair. Chris invited me back to have my hair shaved when I was ready, insisting that this needed to be done by people that know me. 

I have very reluctantly booked 'the shave' for  Tuesday 1st August. I simply can't put it off any longer. With every hand full of hair that comes out it becomes more and more disheartening and  I'm less and less able to find a self deprecating joke that suitably distracts me!

I am feeling particularly encouraged by Chris's invitation and I would like  to mark 'the shave' with some defiance and a long over due 'hair dare' ! 

I have been feeling somewhat overwhelmed with the 'treatable not curable' concept of my diagnosis and have been feeling quite uninspired on a fund raising level, hence the last minute launch of my fundraising efforts ! 

So here is how it works; I'm getting my hair shaved on Tuesday 1st August... I shall attempt to video this experience , but certainly take some pics and if the donations come along nicely and raise £250 I shall ignore my doubts and reservations, no matter what I look like, and post them on my blog  on 15th August! 

'I'm losing it anyway' .. right?  ...'I've done it before and it's not really a dare'?, so why would you donate ? well on a personal level, it offers some 'purpose' to a rather grotty 'thing' I have to do, but more importantly and on a grander scale, it raises funds that mark the event with a 'F.U cancer' spirit of defiance on behalf of the many women and families that are affected by cancer. 

Breast Cancer Now's successful campaign for the routine availability of Kadzyla on the NHS has  particularly struck a cord with me. This happens to be the drug that is prolonging my life and the lives of the many women , so I wanted to acknowledge and celebrate the successful campaign by choosing  BCNow as the charity I am dedicating this 'hair dare' to! 

I have already got a 'just giving' page open for my £1000 challenge that I opened in memory of booby Jo a while back. This page has already raised £283.68 on other fundraising activities, and if would like to and are able to, feel free to donate using the 'Just Giving Shave Dare link at the bottom of this page (web version) to help me get to £534.00! 

https://www.justgiving.com/fundraising/suzanne-wright14

Wish me luck luck luck X

Invisible me

I'm You’ll be pleased to know that I was discharged from hospital on Tuesday 25th July and not before time! A&E were super efficient in responding to the infection. 

Unfortunately I didn’t experience the NHS at it’s finest on  the ward. I didn’t mind in the least that I had to wait 12 hours in a treatment room for a bed, though this sure bothered my loved ones. I am also pleased that the infection was successfully treated and grateful for that, however it was the lack of attention to my holistic care needs that had me climbing the walls and leaving the ward on discharge in a complete huff! 

Several times my pain relief had been forgotten and was as good as ‘told off’ by the cleaner for not having my breakfast earlier, when this 'said' breakfast had also been  forgotten, because this caused a delay in her cleaning routine. 

 I was in a side room on a demanding  ward, staffed predominantly by agency personnel and I picked up staffing and resource  difficulties and challenges in the overall care that  I received. There were of course some excellent nurses and HCA’s that saw me as a human entity, however this seemed an exception to the rule. As I was becoming  more alert , and my feistiness levels as well as my neutrofils levels were increasing,  the  lack of the human  component in my care was becoming more obvious . 

The Saturday night  sticks well and truly in mind when I was abruptly woken with kurt words at 2am and bright lights being turned on without warning for my IV antibiotics treatment.  The Nurse very efficiently administered the treatment and left the room with a clatter bang as she threw her apron and gloves in the steel bin without a single word.  

By the time I was discharged, I was feeling more and more like ’Mr cellophane’  (Chicago musical)  and my tolerance levels were waining, so  when my discharge note omitted significant information I finally launched into a dignified protest, that saw staff  bounce me  from colleague to colleague all keen on avoiding any additional work! 

People don't go into nursing to do a bad job and saw this all as a reflection on a systemic failure within the ward not on any particular individual. 

 I was almost SORRY that I was causing a 'nuisance', ANGRY that I was experiencing this at my most vulnerable time, CONCERNED for patients by age or infirmity that are less robust than I am and I truly HOPE that the feedback that I have left is helpful in terms of  improving their care of patients. 

That all being said,I remain the NHS's biggest fan,though 'if' there is a next time I shall,  with out a doubt, be going to Northampton General Hospital  where there is a specialist ward best equipped to deal with cancer patients. 

The day after my discharge I attended a treatment review at NGH and I was told that I will be given the g-csf injections after every chemo from now on, to reduce the likelihood of further  infections.  With huge relief I also learnt that round #2 of my chemo was not being delayed and as long as my blood tests came back ok chemo would proceed as planned on the 31st July 2017. 

This relief however was  short lived after hearing of problems with my liver function test within hours of having my bloods taken on 28th July ! This means my liver will need a little longer to recover from the damage caused by the chemo and/or infection, so treatment has been delayed  for a week after all!  

This pesky cell is clearly not going down without a fight, but neither am I, and whilst feeling weary, I shall bear recent events as misfortunes of the war that I have unleashed on it. 

Neutropenic Sepsis

Well, I thought I was completely done with telling you about the side effects of my 1st chemo so I could move onto some more of the pleasantly exciting areas of my life, but it seems this cancer lark had other ideas ! 

I was admitted to Kettering General Hospital  late on Thursday 20th July and I'm writing this update from my hospital bed! 

There was really nothing dramatic about it all , and I wasn't really experiencing anything other than fatigue and general 'Blahhhhness' that I recognised as the usual symptoms of chemo ! 

Melanie my niece had come up on Thursday ready for a day out the next day to the Xfactor boot camp auditions , and at bed time I noticed a small lump behind my ear and noted a temperature between 37.8 and 38.1. I was advised by my oncology team to go to A&E as I was in the stage of my chemo cycle where I'm most susceptible to infection due to low blood count.

Kettering A&E were prepared for me when I arrived with Melanie and they took me straight to a side room and took my bloods .

I had been through this with my primary diagnosis and treatment a few times and was always sent home following blood tests, so I expected nothing else this time and I was determined that cancer was not going to interrupt my plans with Melanie!

It was 11pm and I didn't even call Danny and told Russ, and only because he happened to call me, that he didn't need to come and that I would call him when I got home. 

Thankfully, Russ didn't do as he was told and appeared about an hour later just as the Dr arrived to confirm that I was 'neutropenic', had high infection markers and would need to stay in Hospital for IV antibiotics. It was not clear at that time how long I would need to be admitted for. 

I was then determined that Melanie should take advantage of the Xfactor tickets and I sent her home so she could enjoy them with 

Tom, her boyfriend.

There were strict instructions for Melanie to send me pictures, so imagine my excitement when her first text came through the next day, but then the disappointment as I  read that they wouldn't let her have  tickets without my ID!  Sounds as if I have some making up to do with cookie dough ice cream for starters! Lol! 

So.... there were no beds or side rooms available and I spent the night on an A&E examination bed before being moved 12 hours later to an assessment ward. 

I sent Russ home about 2am to care for Reuben and get some sleep. 

I was desperately tired and got 'some' sleep though the sores in my mouth and lips that had been developing since presenting at A&E were preventing me from eating the food offered and reaching the sleep I craved. 

It took over 7 hours and 3 reminders to get the 'Difflam' I had asked for to relive the symptoms, though by that time Russ had brought my bottle of the stuff from home.

The information I had  been given was rather patchy. I was not my usual enquiring feisty self , but was happy with the efficiency of A&E and their  focus on treating the infection with IV antibiotics. 

It was the consultant on the assessment ward that confirmed I had Neutropenic Sepsis and by this time I was clearly more alert to the seriousness of the condition. Basically my immune system had flat lined with neutrophils at 0.1 and I had an infection somewhere that I had no chance of fighting off without hospital treatment. 

To look at me you would wonder what the fuss was all about, though it is 'classed as a medical emergency' and there is great emphasis and advice given on avoiding infections. I had been tempted to seek advice the following morning, and the Dr told me that if I had, this could have been a very different emergency ... and not in a very good way! 

An 'oncology' nurse, Kathy was sent to assess me and advise the Dr's on the assessment ward  on my treatment pathway plan. 

Kathy immediately noted the blistered rash on my hand and was surprised that this had developed and alluded to some careless treatment and advised that I speak to my oncologist about it.

It got me wondering if I should have pushed for a blood test on the Wednesday when I was in the NGH assessment bay about the blisters and whether I was 'neutropenic' then ? 

Anyway , Russ had somehow managed to pull off; Reuben duties, work and family commitments AND ensure that I had all the essentials for my hospital stay! What a legend! 

It was after Russ left at about 2.30pm on the Friday that I probably started to feel all tired,  emotional and a huge burden on all those around me . 

There has been absolutely nothing that anyone  did to have made me feel this way and it's probably a 'default setting' of mine. I just 

feel guilty for bringing cancer into the lives of my loved ones.  Another typical effect of cancer  I'm told! 

Don't worry, I have been told how ridiculous this is and know I need to work on it. Never the less, it's been tough to navigate the 'being needy and feeling out of control' part of this whole affair and have  found it difficult to ask or respond to the many offers of support and realise that this is frustrating for my cheerleaders!

So, having been in the assessment ward for about 6 hours , I was transferred to Deene ward... a big thanks to Taymar who settled me into my new 'cell' during a  'surprise' appearance on the Friday evening. I loved that she just turned up and gave me a much needed boost! 

I would admit to having a few wobblies on the Saturday and probably feeling a tad sorry for myself, but nothing that my VIP  visitors that day didn't sort out ! Thank you Danny, Russ and Mary; you helped helped more than I will ever admit lol !!

I've  been otherwise happily distracted with social media and motivated by the weekend adventures of my friends and family. 

There's been lots of  texts, calls and face time from my cheerleading gang to occupy my time and of course there has been the  excitement of the hospital food that each meal time has brought ! 

             'Food a la NHS'

  Face time with Reuben ! 

Cheerleading pics !

I am writing this blog on Sunday evening, the time  has gone rather quickly, feeling too 'tired' and 'icky' to be bored or bothered about the cell like room that I am in! 

I was supposed to be at the family pic nic that I had arranged today with over 25 of my family members and not writing this blog from my hospital bed ... but I'm deterred  not, the plans are merely postponed and  I look forward to sharing some special moments with those I love very soon .

I got to see Danny today and entertained by his awesomeness...  he left me with 'boofle' to keep me company and a 'cheerleading' pack that he lovingly prepared with 

DIL! 

I'm expecting to learn tomorrow whether my neutrophils have increased and whether the 6 hourly IV antibiotics have done the trick ! 

I've been having daily G-CSF injections to stimulate my bone marrow to produce blood cells , so I'm hoping this has worked so I may go home tomorrow to my home comforts and  my lil' love bug Reuben x 

'Pharpsy pants'

I started to write this post on 10th July 2017 direct from the newly refurbished Chemo suite and the rather comfortable electric reclining chair that all our fundraising adventures contributed towards the last time around … a job well done…. Thanks guys!

        Link for opening article

It's taken until now to pull this post together and this is purely down to CBA reasons! Writing down my experiences remains such a helpful process for me,  but translating my thoughts and experiences into 'interesting'  bite sized chunks is a lot easier said than done when experiencing general feelings of malaise ... and when it isn't 'flowing it 'aint' happening'.... my mind is exploding with things to write and this is where I have got to;

The treatment 

So, following an echo cardiogram and PCA (pre chemo assessment), the first lot of 'targeted'  treatment went a head on 10th July 2017. I was given Herceptin and Pertuzumab intravenously and was at the hospital for most of the day for monitoring.  It was a looooooong day, though it seemed to go really quickly with DangeRuss for company and time filled with card games and a take away from Dreams Coffee Shop. Yum ! 

The chemo nurse recognised me and remembered my hair dares from the  last time around and the familiarity I felt certainly took the edge from affairs. I felt glad that I had decided to return to Northampton General Hospital  for treatment despite my move to the Kettering area.

I was back at the hospital the next day with my newly wed friend, Ruth, and this time for the Docetaxol chemotherapy treatment. We were in and out within 2 hours and quite literally it felt like an 'ordinary' catch up between friends although I could feel the significance of the event in Ruth's exemplary care and concern for me.

post chemo breakfast treat and Cath up with Caroline

The side effects 

The fatigue, tiredness and taste changes were the first of the side effects to take a hold, almost immediately, although it is quite possible that some restless, anxious nights and  busy day's contributed to the overall feeling of lethargy.  I slept a lot for the first few day's and as symptoms developed around  day 4 and 5, I have relied on pain relief  to manage the  'sledge hammer' force pain in my ribs and skull.  I remember this from the last time and thankfully it is all manageable with the concoction of medications provided by the hospital. 

There is already some 'chemo fog';  with some slow processing of information and I'm frustratingly struggling to grasp the words I want to say….. general ditziness really. I don't think I fully recovered from the first time around, though never before now, have I poured fairy washing up liquid in the laundry detergent 'thingy' for my washing machine! I really didn't need to admit that …there were no witnesses! 

I'm sure Danny will be keen to tell me 'no change there' then and remind me of similar faux pas, so I shall give him a preemptive  'kick up the but' for his cheek when I see him !

Then there is the blurry vision, I certainly didn't experience this the last time…. even with my prescription glasses, I have struggled to focus my eyes at times, but this is nothing compared to the more embarrassing 'abdominal' symptoms that have found their way into my life …………… I will leave the detail to the imagination but 'DangeRuss' captured the general theme of things in a recent remark…

'How can someone so beautiful, smell so bad!' 

Seriously though this IS 'a thing' when you're on chemo, so I shall allow myself some guilt free 'chemo pharpsing' and hope my dignity survives this round of chemo ....Those nearest and dearest will  be relieved to know, that this only lasts a few days ! I am literally crying with laughter writing about this and thankfully I'm over this 'pharpsing phase' so it really is safe to be around me !

Moving along nicely  now...

I saw myself calling the emergency assessment bay on 16th July for advice after a rash and swelling was emerging from where the cannula from treatment had been on my right hand. 

By the 29th July small blisters had developed requiring a trip to the hospital for assessment and treatment with steroid cream. It seems the chemo is ' an irritant' ( no s#@t Sherlock) and probably leaked a little. I recall making comment after the Docetaxol treatment about the rather heavy handed chemo nurse,  who seemed to 'tear the cannula and dressing' from my hand. Whether this contributed or not to the rash, I do not know, though I can't wait to offer some helpful  'feedback' !

I've lost concentration and done talking about the side effects now! These  are just features of my world at the moment, life does go on and at the moment, this means attending to the  'normal' day to day things and finding as much 'mischief' and sharing as many moments as I can with family and friends, to avoid feeling 'lost and left behind'. 

Pre chemo family mischief

'Hot Spots' and treatment plan

I have somewhat dusted my self off since my last post and I am pleased to say, some emotional balance is restored. I have had some fabulous messages of care and concern that have been cheer leading me along …. though, I really didn't mean to worry anyone and have felt a little embarrassed to be honest.

You see, what I omitted in my last post, and I am able to best assure everyone, now that the dust has settled, is that I remain stedfast in positivity. Yes…..the cancer diagnosis has blown my mind and for the time being, an undercurrent of sadness has established itself  my world, but this does not mean that I have lost sight of the wonders in my world and the joy and the happiness around me.

This I guess is what being human  and life is all about….. where sadness and happiness as seemingly incompatible emotional states can co exists …. where one emotional state can dominate over the other at times, and as it has done for me recently; set me off balance.

It's quite logical that I experience 'sadness' as I begin to re focus the direction of my long term hopes and dreams. But rest assured this year IS already being defined by immense joy; I will just have to 'know', that my emotions will fluctuate and this may happen in a 'nano second' when I become frighted or overwhelmed.  I'm assured by the ladies in the 'living with secondary cancer' group within  the Young Breast Cancer Network site (YBCN), that this is all part of the process and that this will get easier as time goes on…. This seems all the more doable with the presence of many cheerleaders that have spared a word and a thought for me, to whom I owe a debt of gratitude.

Having unintentionally gone out of my comfort zone and exposed the vulnerable me, I funnily enough, found it to have been a relief , and so I'm glad I 'kept it real'.

'Anyhow' (said in a 'Gill Shipman' like Scottish accent), apologies for the emotional waffle, the point of this post was actually to update you on the medical stuff, so without further ado…..

The results

I met with the Registrar (I cant remember his name) on 20th June and saw him alone initially whilst I learnt  the results of my CT PET Scan. Danny, Sue; my XMIL and Russ  came to the appointment with me,  however I had decided  before hand that I wanted to hear  news of the results first. I was glad I did…… the news was the best that it could be, but that time alone with the Registrar allowed me to 'tune in' to the news and 'tune out' of others.

So, I learnt that I have several 'hot spots' (malignant lymph nodes) in my 1) right and left Supraclavicular area ( left and right collar bone), 2) left axilla (arm pit) and 3) left groin. It seems the one in the groin is unusual, and the Registrar seemed happy that I had already had my ovaries removed! 

The Registrar went through my results with me using a written report and he happily logged into the images when I expressed  curiosity about them. 

There was certainly some 'Scanxiety' leading up to the appointment, so much so that I booked myself and my XMIL last minute tickets to see Celine Dion at the O2 for the evening of the appointment, hoping that it would 'void out' what ever news I had. I know I do this a lot ..... always have done; to find  something that stops oneself from being paralysed by the challenges of life and why not....it's my way and it's worked for me so far ! 

With HUGE relief I was told that there was no sign that the cancer had spread to any other areas of my body and for that, I felt I had won the lottery and making Celine Dion a special memory making moment with my XMIL!

And while we are at it… although side tracking somewhat ; there were some more 'joie de vivre' and 'sugar coating the crap' moments ' at Royal Ascot this year at Ladies day!

Ok, so back to business…

The prognosis

I broached the 'prognosis' question, and to be honest I was initially a little frustrated that there wasn't a number given in terms of years of life…..I think I just wanted to be able to 'plan', you know; life, finances, work and well…..'stuff', but alas, it seems that this all relies on how my body responds to the treatment.

The Registrar explained that ladies can live several years and told me of a lady in the clinic that day that has been stable on Herceptin treatment after 10 years. I found this reassuring and have decided that this will be me….right!?…

I am also acutely aware that other ladies are not so lucky as the Registrar confirmed, so the focus shall have to be on the quality of my life…not the years.

How I feel about this: To articulate my feelings exactly, I'm stealing the words of Lesley Graham, who lost her life to breast cancer but not before campaigning for NHS availability of cancer drug Kadcyla 

 "living with cancer is like someone pulling the pin out of a hand grenade and forcing you to swallow it. The grenade might go off, it might never go off, or it might go off in the next 10 minutes"

mmmm……

The treatment plan

Well, with Danny, XMIL and Russ in the room….oh and Kath the BCN , the Registrar told us all that the treatment plan will start with 6 cycles of docetaxel chemotherapy which will be administered intravenously every 3 weeks.  This is aimed at getting rid of the known 'hot spots' and preventing the spread of the cancer.

I will also be given Herceptin and Pertuzumab which are targeted therapies and I will be on this combination every 3 weeks for as long as it continues to keep the cancer cells from spreading.  The Registrar has to make an application to the drugs fund for Pertuzumab as this is not standardly available on NHS.

Contrary to what I was originally told, I was advised that radiotherapy was not part of the plan, and this is because of the amount of 'hot spots' there are. Radiotherapy may be an option in the future.

I am booked for an echocardiogram on 4th July and a Pre Chemo Assessment(PCA) on 5th July 2017. The chemo will then all begin on 10th and 11th July, it will be the start of a life time of treatment for me and I will be scanned regularly to check how treatments working.

I had docetaxel x3 the last time around and am familiar with it's side effects. I hope to tolerate this as well as I did last time…… I will lose my hair again, a necessary evil, never the less it is not something I am looking forward to.  

I have been pondering over using the cold cap to try and prevent hair loss. I may not be eligible for this, but anyway on balance I'm not sure it's the right way to go for me anyway.

I also had Herceptin the last time around and these side effects were more doable, although  these will now be long term and I will be motored via echocardiograms for known heart related side effects. 

Suffice to say I have a busy few months ahead of me but finally glad that 'the show is on the road'

In the mean time I will leave you with this article posted by my SIL on FB. Thanks Susan, it speaks volumes and worthy read  if you know someone close affected by cancer.  

click link : What your friends with cancer want you to know but are afraid to say