Grace and Favours

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

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

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

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

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

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

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

Meeting my Great Nephew Caleb for the first time

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

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

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

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

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

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

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

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

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

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

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

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

Getting a grip!

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

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

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

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

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

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

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

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

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

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

Dr Knight-in-shinning-armour

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A  pre-pre op cake moment with Jules

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

'A symphony in my head'

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

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

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

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

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

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

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

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

                                                  Folliculitis free picture 

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

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

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

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

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

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

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

The symphony of life continues

'Something To Look Forward To'

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

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

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

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

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

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

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

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

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

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

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

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

                                                  Fore He's a jolly good fellow!

'A warm blanket of love'

So, yes, I was ‘losing’ it anyway (the hair not the mind!), but ‘taking control’ was the message of defiance I had cultivated in my mind which ultimately prevailed over the competing thoughts of the dread in my head. The deed became  more palatable to bear because of the overwhelming response of all my cheerleaders. The messages of support from family and friends has been like having a ‘warm blanket of love’ surrounding me, armouring me from ravages of cancer. Thank you guys and #F.U Cancer!

The response to the  ‘just giving page’ has been phenomenal and I have since been ‘possessed’ with a sense of purpose that extends beyond the me, my self and I. How amazing that together we are making a difference by funding research to achieve ‘Breast Cancer Now’s’ aim to stop women dying of breast cancer by 2050. What an amazing legacy.

Over night the target for ‘The Shave Dare’ had been reached and within 24 hours the overall £1000 challenge had been smashed. We have since reached an incredible £2,310.12 and I have been told I need to increase my target!

I have been humbled by the apologies from people for not donating  large amounts, for the point is that ‘we all do what we can and this is what makes a difference and every penny really does count. 

Quite remarkably, I have received well wishes  and donations from people that I do not even know. Not in my wildest dreams did I anticipate this response. Thank you all for sharing my story and helping with this. I have also been introduced to the ‘To Dare is to Do’  quote by one benefactor. I’m told this quote is associated with  #Spurs F.C and whilst I have no affiliation to the team, It was written in a cheerleading message from Russ’ friend Karl Lewis and captures the spirit of events for me perfectly….. 

The ’Spurs’ reference on social media went on to generate lot’s of football banter, which to be honest was ‘TOOOOTALLY ‘ lost on me. The passionate message exchange on Russ’s Facebook page was HILARIOUS and even encouraged more donations when Russ, a #Liverpool F.C fan,  accepted a dare of his own and changed his profile picture to the #Arsenal FC logo. I’m told this was quite painful for him!  

So, I woke on the morning of the dare on ‘high alert’ mode and tried my hand at shooting a video diary clip of my pre shave preparations and thoughts. I could see that the hair loss process was distressing for others to see me go through and I was conscious of ’freaking’ people out with it all. I wanted to approach a difficult thing with some ‘matter of factness’,  and I know already, that I have raised awareness of the experience for some that have seen the clip. Hair loss due to cancer treatment is a very personal thing and those affected will go through their own individual process of dealing with this. Not everyone will be as open as I have been, this is just my way, so if this is affecting those you  know and love , take their lead on how they want to manage this and remember that ‘warm blanket of love’.

Ruth and I travelled  from my home to  Northampton  and with a failed attempt at  ‘Car Pool karaoke’ behind us, we found Gill and arrived at Toni and Guy’s with some cakes and goodies for the Team.  To say I was nervous is an understatement but this was short lived when Chantelle welcomed us in and told me her plan . I had quite literally expected  her to just shave my hair, however Chantelle felt that this would be too brutal and so I received the full professional salon experience again. 

Bex, one of my original cheerleaders popped in to shake her pom pom’s and left leaving a ‘lightning bolt’ suggestion in her wake ! So thanks to Bex I had a Harry Potter scar shaved into my convict hair.  Chantelle’s staggered approach to ‘The Shave’ also took me on a trip down memory lane, with the 80’s cut I had when I was a teen and an ‘Ann Hathaway’ look from her character in Les Miserable!  Never forgetting and not really caring that  that we were in a very busy town centre salon! 

Apart from the pool of hair falling out blocking the sink, and the hair being cut out cascading to the floor, this just seemed to be a normal trip to Toni and Guy with a natter about life, love, hopes and dreams and so there was definitely some successful ‘sugar coating of the crap’ activity going on!

I’m relieved to say that Chantelle and ‘my besties’ loved my choice of wig and so Zara was an instant hit! 

I had a proper pampering and walked out of Toni and Guy with a zest  for life and all things positive. 

The last time I have it shaved, this was done without any such ceremony but with a ‘no nonsense’ shave it off concept. Whilst I throughly enjoyed the pampering this time, I can’t say that I prefer one approach over the other. I didn’t want to shave it after all and I felt indifferent really in terms of how it was ultimately done.  This is a highly intimate thing and only worked this time because of the relationship I have with Team Toni and Guy. 

What made the difference each time was the people that I was with,  and the love that surrounded me. I just rolled with the opportunities of each occasion! The last time Danny, my son was with me and ‘Vivienne’s debut’ was marked with a lunch time date at ‘Dreams’ coffee Lounge and there was no favouritism this time either, Zara made her launch at Dreams, on a girly lunch date too!

So, ’I Dared and I Did’. By the time I got home I was both emotionally and physically wiped out. It was sheer adrenaline that saw me through the day and I enjoyed a 12 hour sleep marathon at that! I have literally struggled to keep up with the messages of support and just giving activity and thank everyone for their patience whilst I catch up with my thanks and updates!

As for life without hair, It is what it is …..Reuben introduced himself to Zara with a ‘sniff’ and has rather taken to licking my shaved head when ever he has the opportunity …. Rather nice actually, in fact the sensation is on parr with when he licks my toes!!.. Each to their own Lol!

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.