The first Oncology appointment and Quality Assuring!!

Steve and I met my oncologist, Professor Eldeeb, for the first time on 19th Decemeber 2014,and I signed the consent forms for the treatment plan.

We learnt that the echocardiogram raised no concerns and The Prof. was not concerned about the results of the bone scan or the CT scan.

I left the appointment feeling confident that I was in good hands, although I sensed that he didn’t fully understand my need to have as much information as possible, preferring that I focus on the present issues at hand. Steve seems to relate more to this approach, and whilst I understand that my focus has to be on the ‘now’, I get unsettled by unanswered questions and so I appreciated the answers about genetic testing, CT results and my prognosis.

So, I now know;

The Prof. was not concerned about the results about the bone scan and whilst relieved that the cancer does not appear to have spread, The Prof. appeared to dismiss my question about what Dr Salsbury had said about the scan picking something else up ... I had not thought to challenge this at the time as I really do feel I'm safe hands .. however having two professionals saying different things means this matter is unresolved for me...So not a concern for The Prof. but something I will look further into!

Genetic testing is not a priority in terms of my treatment at the moment, and I was advised that I will need to seek this via my GP. Not a priority in terms of my treatment may be but a priority for me in terms of my family and I will be making an appointment with my GP in the new year. There is history of breast cancer in my maternal family. My Nana, Aunt and a second cousin have had breast cancer. My Cousin died from the disease.

The Prof is aware of the adnexal cyst (?) picked up in my CT scan, but he told me that it wasn't a priority in terms of my treatment…But a priority for me in terms of piece of mind …I had already spoken with the GP about this and an ultrasound scan is already booked in on 8.1.14. The Prof was happy that I continue with this appointment.

The prognosis….After satisfying himself that I really did want to know, The Prof. keyed in my cancer details into a prognosis tool on his PC . We were ‘initially’ told that with treatment, my prognosis at 5 years is over 90% survival and at 10 years is 70%.

Steve and I looked ‘smug’ at each other and I was well satisfied and relieved given the Nottingham prognostic tool results!!!

The scene that followed, however wiped the ‘smugness’ from the both of us… As Steve and I made comments of relief to each other, we could see that The Prof. became distracted and his face ‘dropped' as he told us that he had forgotten to key in some important details in the prognostic tool……

The Prof. duly explained that with the addition of the missing details; My prognosis at 5 years is 65% survival and at 10 years is 30%.....

Worry not say I …knowing ones odds, means knowing what odds one needs to defy…

Having a prognosis may not be helpful or appropriate for some and I wouldn’t recommend that it is sought without serious thought before hand. I knew that with my level of self awareness that my prognosis was going to be of help to me, after all knowledge is power! Steve has been very supportive in my decision to seek a prognosis; however he, himself would not choose to know. Danny, a little like me, told me that he would prefer to know.

Prognosis for me means empowerment and opportunity. I am not preoccupied with the percentages given to me and I remain robust in my determination, however the reality is that I am facing a potentially life limiting disease and I chose to take control and ‘quality assure’(QA) my life .

Those in my ‘social work’ world understand the concept of ‘QA’… an opportunity to take audit, checking in on whether you are making a difference and getting a grip if you are not!!

I remember at the age of 14 when I spent the summer in Spain at ‘English Summer’ with my paternal family. I was having the time of my life and did not know that my mother was dying when I left for Spain. I’m told that my mother didn’t know she was dying either.

Some of my last memories of my mother were laced with 14 year old anger and ‘stroppiness’ as she had not been responding to my letters (no mobile phones and emails then!!) As a 14 year old I thought that she simply didn’t care, where in fact she was too ill to write. I never saw her alive again and we never got to say good bye. I remember being tormented with guilt and regret for a long time and to a certain extent some of the guilt has never really left me.

I believe that had I known she was dying, or had she had known, there would have been opportunities on both parts that might have made a difference to each other. I’m of course not planning on going anywhere for a long time, but the point is, because of what I know there isn't going to be any regrets in my life. This will mean prioritising the important things in life like spending time and memory making with loved ones.

There are of course no guarantees for anyone and I wouldn't recommend that you wait for your own wake up call...It may be too late ....So my lovely family and friends ... Get 'quality assuring' yourselves!!!

Booby 'gush'!

Following the bone scan on 13th December, I had a few days to be honest where the pending results were playing on my mind. It was the not knowing that preoccupied me, I just wanted to get on with what ever I had to deal with.

This was certainly a period of reflection and those that know me the best would have seen some signs that I was having a wobble, but otherwise It was business as usual...until Sunday (15.12.14) that is!

The wound under my boob decided to give, and ALL of the fluid that was causing the swelling gushed out ..... In public! I was soaked right through to my coat and Jeans ..... I remained calm and composed as Steve's children and a friend were with us, but I wish I hadn't as Steve had not appreciated fully what had happened and announced jovially that Suzanne's booby had exploded!! ...

Anyway, following a trip to out of hours clinic (where they had no dressings!!!) they sent me to A&E (what an experience) and I left at 11.30pm with a 'deflated' leaking booby, dressings and a prescription for antibiotics.

Because of those events, I attended the breast clinic for a check up on the Monday (16.12.13). Marion, a breast care nurse attended to me and after initial inspection she brought in Dr Salisbury who removed a clip from INSIDE my wound. It seems the clip had been working its way out of my body and may have contributed to the 'gush'.

Apparently the clips are used as markers for radio therapy treatment and I have several.

Marion had also chased my bone scan results and whilst the full results were not in, Dr S. told me that there were NO signs that the cancer has spread to my bones! The scans have picked up something that is probably related to age (!) which will be explored further.

My wound was dressed with a 'bag' to collect any further fluid. The other dressings were just not coping with the amount of fluid I was loosing. This immediately felt so much more comfortable than the dressings and the towel I was having to wrap around myself to absorb the fluid!

At that appointment I asked Marion to take over as my breast care nurse. This was for no other reason than Marion seems to have been there (covering for Annie) during key appointments and the surgery and I have built a rapport with her . She is also highly efficient! Marion called me soon after my appointment to tell me that she had sorted the oncologist appointment for Thursday 19th December. YAY!

so... with Steve on an overnight trip, I spent Monday hibernating at home. X

Wonky boobs and update

My next round of appointments have come through and I'm closer to knowing how 2014 is going to begin for us!

My bone scan is booked for Friday 13th December.. Lets just hope the day doesn't jinx the results!!

My echocardiogram is booked for 19th December .

I'm still waiting for my first oncologist appointment and hope this will be before the new year. It is the oncologist that will take me on the next step of the cancer thrashing mission! I will also find out dates for my first chemotherapy session.

I have also realised that I have rather neglected to mention my ' perfect boob' for quite some time.... well ..... With the poorly one being quite large (swelling)and more pert than it has ever been (temporary implant) the perfect one is in fact feeling a little inadequate!! It's only consolation of course is that a nipple sits in pride of place!!

So .. with the increased swelling in my poorly boob and some leaking of lymph fluid from my wounds ... I had a booby check up with Mr Dawson on 12th December ! Mr D duly recommended that if I could , to bear with the symptoms as to drain the fluid could cause infection and complications ... So on I soldier on with wonky uncomfortable boobs!

Annie the breast care nurse also told me not to panic if the fluid leaks out in a gush from the little wound under my breast !! .. Apparently I have over a pint of fluid there.. Lets hope there's no gushing!

A booby brunch and the CT scan

After a morning stroll to the new Wootton Waitrose last Thursday (28th November) the lovely Gilly Bean and baby George visited for a 'waitrose' continental breakfast!Being 30 has not stopped Gill playing with her food.....She replaced the raisins on the Danish pastry to make the pastry look like boobs!! Quite apt I think, but not good role modelling for George .. Lol!!!

Thank you Gill, baby George and all of my family and friends for their visits and well wishes , which has been such welcome distraction to this 'being ill lark!' Im really not used to being 'limited' by sickness (if that makes sense) and emotionally I have every feeling from feeling guilty for not being at work to feeling a burden on family and friends.

I'm generally feeling upbeat, however it can feel frustrating to get to the point of tears on occasions, for no particular reason! I actually cried (a little!!) on the way back from Waitrose, when I felt overwhelmed by the beauty of nature, as I saw a squirrel scamping past me and up a tree that was in the last throws of autumn colour.It seemed like all my senses had woken up after a long time and thrust upon me this rush of adrenaline through my body!

I'm not sure I fully appreciated how consumed by work I had been until this diagnosis has forced me to stop and tune back into life!

I'm also doing some quite bizarre things, such as tidying away the fairy liquid in the fridge and fresh orange juice in the cup/ coffee cupboard and I try to explain to others that this is because I'm distracted by the 'pesky cell'...I really can't get away with this with certain people such as Danny and Gill, who remind me, whilst laughing , that I'm a little ditzy at the best of times....so I can't use that as an excuse!

Physically; its not as bad as I thought it was going to be after the operation and I'm ok with the physical aspect of it all. There is just a general feeling of 'uncomfortableness' since the operation, particularly at bed time where I can't sleep in my usual position! I also have the most annoying 'numb sensitive pain' under the length of my left arm and occasional piercing pain where my scars are healing .

So.... After lots of baby talk with Baby George and a hair straightening session thanks to Gill.... I was well ready and beautified for the CT scan in the afternoon. With Steve by my side at NGH, I took the required fluids over an hour period before a 3 minute CT scan procedure.This was great opportunity to start the book that my DD's gifted me... Hunger Games..... and I became hooked immediately!

I will learn the results of the CT scan on Thursday 5th December, along with all of the other test results from my operation.

Post operative diagnosis and results.

I received my results on 5th December 2013…Apart from focussing on some great memory making moments on and around my birthday, the time leading up to this felt a little surreal in which I spent some time ‘researching’ and developing some educated guesses about the results I was to receive.

I wanted, no, needed to be prepared for the news, and ‘in control’ . My educated guesses were preparing me for an aggressive cancer with a poor prognosis, however because I am not a medical professional I was more than happy not to be right….just this once!

I went to NGH ‘armed’ with Danny and Steve. Thankfully Steve recovered quickly from a car park melt down and from general clinic tardiness, so we all sat eagerly whilst Mr Dawson gave us the news.

Firstly the good news; ,Mr Dawson explained that the cancer was widespread in my breast with several focal points, however it had been removed with clear margins and I was told that my CT scan was clear.

It was through further questioning and Mr Dawson’s patience that I gained more information. This is the first time that I have felt that this ‘was about me’ and not that I was just another patient in a system/procedure. Mr Dawson gave me the time I needed to understand what was a head of me. As agreed , Mr Dawson also sent me all ofthe written information so far.

So….. my official diagnosis is: T3 N2 Grade III micro-papillary carcinoma. In other words ‘a large high grade cancer with substantial axillary spread’.

12 of the 14 lymph nodes that were removed were affected. My results also identified that my cancer is ER , PR and Her2 positive.

With this information, the multi disciplinary team came up with a treatment plan involving;

a bone scan
an echocardiogram
6 cycles of Chemo
5 Weeks of Radio therapy
1 year of Herceptin
5 years of hormone therapy

And a partridge in a pear tree!

Unfortunately my educated guess is now a reality. Mr Dawson seems to understand my need to have as much information as possible. He gave me a copy of the histology report during the consultation.

I asked about my prognosis. My cancer has been removed and the Chemo will terminate the cancer cells that are currently cruising around my body seeking to survive. However, I’m realistic that there are several risk factors at play here , that make the chance of reoccurrence high. So my prognosis…

Mr Dawson explained that the oncologist would go through this with me, as there is diagnostic tool used to calculate prognosis based on statistics called the Nottingham prognostic index … satisfied with this, I left the appointment, but having read the histology report when I got home, I noted that the index score of 6.7 is listed on there.

Google has helped me interpreted this to be a 50% chance of survival at 5 years. I will of course need the oncologist to talk this through with me, however in the meantime I have placed my self firmly in that 50% that will survive over and beyond….after all there is the hope that there will be grandchildren to spoil in my future!! (I will of course get told off for that comment!)

Like me, Danny is keen to know as much information; however Steve is not so sure. Even though the cancer is out and chemo will destroy all the current cancer cells, I'm not sure Steve fully understood that there could be long term implications.


Whilst at the appointment, my breast was examined. My wounds are healing very well, however I’d been experiencing tightness an uncomfortable swelling for a number of days. My poorly breast is noticeably swollen, and it seems that if the lymph fluid does not absorb into my body naturally, I will have to have it syringed out, so here’s hoping nature kicks in and sorts that out!

Since receiving the results, I remain steadfast in my determination, although I have felt somewhat ‘flat’, forgetful and distracted. My family and friends have been fab!

So many people have reached out to me. A ‘friend of friend’ Kathy, from Boston, USA, gifted me a ‘pink’ prayer book and a ‘fight like a girl’ T-Shirt!.. I never met this lady, but I can’t believe how much strength I have drawn from such a kind act… it’s as if she knew what I needed….. as if she just knows?!! A great role model!

Memory making and 14 year old me!

Memory making and 14 year old me!

... The 2nd December!! My 41st birthday...

I've been a little pre occupied with other things to bother much with my birthday on the run up to it, but as usual I was spoilt by those around me never the less .

I spent a glorious day in London the day before with Steve and the kids , lol (Danny and Becky). I was Spoilt with time and memory making !! Thank you my special ones xxx

Today, the 3rd December, is the 27th anniversary of my father's death . Thoughts of daughterly love are always with him and particularly on this day.

This year feels different...I have cancer and I need him ... Like my 'squirrel ' encounter my senses are magnified and I'm taken back to '14 year old me' and the intense loss I felt at the age when I lost him.

There are a few private tears from the '14 year old me' today; and now I carry on with the strength and fortitude he gifted me and the love he left behind .