‘Unexpected kindness is the most powerful, least costly, and most underrated agent of human change’ – Bob Kerry

I feel disappointed. Disappointed that I was unable to write more about my experiences of being a patient, going through a procedure to help remove a cancerous tumour. As a nurse this kind of testimony is really important, it helps reflection of the mind, ensures accuracy and the biggest motivation of all for me, demistifies the whole process of cancer and the fear it creates in people.

However, best laid plans and all that…….

My operation day finally came round and I actually felt relieved to be going in, to get it done, and for someone to have eyes on anything else that may be lurking with the tumour.

My bag was packed and at the ungodly hour of 6am we set off. I was so grateful to have John at my side, I felt like a little girl waiting to start my first day at school. I was gaining strength from having him by my side, the person that knows me the best, my confidante and protector. This was until I realised that once checked into the surgical admission unit, I was to be called forward to go into the unit alone, and would have all my pre op checks done without him there. Relatives are not allowed in the surgical admission unit due to lack of space and ease of service. It certainly was a very effective admission and I could not fault the system, which was very slick, especially as I was first on the list. However, it was a real moment of having to ensure my big girl pants were well and truly on, and to adjust to going it alone.

I have never been afraid of operations or hospitals, never one to quake at the thought of anaesthetic. I knew the procedure, what I would wake up to and how I would go to sleep, but I still felt a flicker of fear. Whether it was waking to find they had found more cancer, the chance of an internal bleed or the possibility of something going wrong. The fear was irrational, as I have found so many times this time around, it was based on worse case scenario, on fear that my children would lose me, and on feather like thoughts floating down around me, mocking my normal sensible, rational, logical nursing brain.

The team were really great, the anaesthetist filled me with confidence, the registrar who was the right hand man to my consultant, in charge of the ‘patient end’ of surgery, rather than the robotic device my consultant was driving. I met each one, face to face before surgery, giving me time to examine their faces, to commit them to memory as the men who I would place all my trust in.

The brief interlude from being given a sedative to being put to sleep was amusing with hearing myself saying weird things in response to sensible questions, I laughed and then took in the words, now it’s my turn to look after you, relax, and I was gone……into the blissful world of sleep, heaviness and slumber.

I awoke to hear the recovery nurse saying my name and telling me that I was now in recovery and it was over. The first thing I did was ask the time, only to find to my amazement that it was 4pm! I had sat on the theatre table at 8.30am and had lost 7.5 hours!? I later found out that surgery had taken a little longer than expected as I had bled and then recovery too was longer than expected.

In the fog of gaining wakefulness I became aware of a bag of blood hanging from me, a drip, a huge cannula, and a catheter. Then my body started fighting back…..pain, sharp, raw and stinging entered my awareness. I was shown the patient controlled pain relief button and it was blotted out again, leaving me woozy and blissful.

My overriding memory of that afternoon was seeing John when he came into the room I was in after I was returned to the ward. His familiar face, so dear to me, so comforting and reassuring. I was back to bring that little girl again, needing a hand hold and words of comfort.

The next 24 hours were uneventful. I had to remain laying flat in bed due to the bleed that I’d had. The consultants came to see me and told me that all had gone well. I think I remember them saying that all was clear, the tumor was removed cleanly, and that they wanted me to take it very easy and not move due to having a bleed. I say think, because I was still very woozy and in the midst of pain relief, and couldn’t remember if I dreamt it or it had happened for real.

My children came to see me, I was so thrilled to see them, but slightly aware of the alarm on their faces when they saw me. I later found out that it wasn’t the bag of blood, the bag of urine, or the scary machine attached to me giving me pain relief that scared them, it was actually the nasal cannula for oxygen. Children are never predictable, and for some reason the oxygen was remembered to them as something that people have when they are dying. With reassurance they were fine, and I was given cards, hugs and a lovely glass jar of cookies that Emily had made for me whilst she was at Grandma’s.

I dozed on and off until the next evening, when I suddenly awoke with a crushing headache, a racing heartbeat, increased pain and feeling horrendous. Not one for wanting to call the nurses unnecessarily I hung in there until I felt maybe I should let somebody know after a couple of hours that I was feeling so rough. The doctor was called and it was decided that I had an infection, with a high fever.

The next couple of days were a bit of a blur. I had to wait 24 hours due to the bank holiday for my antibiotics, which subsequently made me feel really sick. For those of you that know me well, the shocking part for my family was when they came into find my tray of food uneaten. I love my food, but I began to dread the ward assistant coming in to ask me what I wanted to eat, as I truly wanted nothing.

I had a surprise visitor to the ward on the Saturday. I had been in contact with my local vicar the week before to ask for an opportunity to talk to him. I wasn’t being fatalistic or thinking I was going to die, I needed to talk to him about the anger I was feeling. His visit to me on the ward was so comforting. I was put at ease as he asked me about things that has gone on in my life, encouraged me to be angry and rant about the unfairness of my children having to go through a second cancer diagnosis of a different type. The whole visit was a really good opportunity to reflect, to be angry, to cry, to let it out….. Something of which I have become aware that I am not able to do easily.

On the Sunday evening, after informing the nurses that I felt terrible again with another horrendous headache, the duty doctor was again called. I was sent to the CT scanner at 6 in the morning to ensure this was not due to any bleeding or concerns regarding my brain. Thankfully this was all clear and it was felt the cluster headaches I was getting were due to the antibiotics.

After having several doses of antibiotics I started to feel less feverish, still unwell but had a terrible wrenching need to go home. I decided I was going to do everything I could to get myself home that day, after realising that I hadn’t left the room I was admitted to at all.

I made my escape on the Monday of the Easter weekend, I never realised how much lovely it is to be home until then. Emily Rose wheeled me out into the unexpected sunshine, and John and her were like a well oiled machine working in unison to get me home.

Once at home I continued on the antibiotics for another 5 days. I still found it a task to eat, I felt sick quite regularly, and very unwell. I expected my time off after surgery to be one of sleeping, reading and catching up on box sets on Netflix. I truly felt too ill to do anything. I even joked with John that chemotherapy was preferable to the surgery I had, the infection and the antibiotics.

I couldn’t work out why I had breezed my way through a lumpectomy, chemotherapy and radiotherapy, and yet was struggling after a simple laparoscopic partial removal of my kidney.

Yes folks that’s the weird way that nurses think!

I have been amazed at the way my body has responded so swiftly and efficiently to coping with trauma to one of my kidneys. The way my skin has healed and my wounds have corrected themselves. The way of the bruises have faded, and my appetite has returned.

I’m now beginning to feel like I have climbed out of a cave. Nothing was normal, my body felt abnormal, my appetite dwindling, my ability to get up and walk about without feeling like I was 90 years old wasn’t present and to top it all off we had a house move 8 days after I returned home. My home was now a house full of boxes ready to move.

During the time I have been home I have learnt so much about love and gratitude. About letting go and letting people do things for you. Letting people be kind, thoughtful and loving. Accepting that their actions are something that I can pay forward myself when I am fit and able. I cannot begin to explain the amount of gifts, food, lifts, help, hugs and wishes I have received. Not just from family and my loved ones, but from friends and colleagues too.

I have accepted that I am not infallible, that I have to let go, that I can’t do everything, and that people want to do things because they love me. I’ve let down my veil of showing the world my public face, and have learnt to open up, be angry, rant, feel hopeless, admit to being scared, and allow myself to be vulnerable.

I won’t say onwards and upwards, as I have heard myself saying this over the last couple of weeks, because I realise it annoys me intensely. It isn’t onwards and upwards, it is onwards and forwards. Sometimes wanting to go backwards, sometimes not wanting to go forward. Going with the flow. So for now it’s learning to deal with my impatience, forcing myself to rest, trying not to leap forward, and keeping myself going with the thought of a possible holiday sometime, a drive out in the car, or even a walk to go and collect Emily from school.

Not to mention the compulsory visit to IKEA, with the perfect excuse of a recent house move ………meatballs, daim bars, flat pack furniture and buying things ‘we really need’, will no doubt enforce the feeling of normality I crave!

‘We can complain because rose bushes have thorns, or rejoice because thorns have roses’ – Alphonse Karr

I’ve had my results. The phone call was unexpected and low key, just a case of my specialist nurse calling me whilst I was at work and telling me that it was indeed, not secondary breast cancer, but in fact primary renal cancer.

In that very unspectacular moment, which seemed odd without trumpet fanfares, drum rolls or a theatrical actor announcing the results Oscar style, my chances, future and perspective changed.

I’ve got this, it’s ok, it’s not spread and I’ve got a bloody good chance. I could even be cured! I felt so elated that I triumphantly announced to the ladies in the office ‘ it’s ok, thank God, it’s only renal cancer!’

Perspective is such a great gift, it seeks out those dark thoughts, sucks them from the corners of your head, and the room, pulls out the worm crawling through your mind infecting all your thoughts and banishes them in to obscurity via a positive portal.

It’s instant, it’s overwhelming and it’s flipping awesome!

That feeling of relief, however, is soon overshadowed by new negative worms, but if you can keep a handle on them and firmly tell them to go away, they never really get a grip on your mind.

Life is full of pain, and also full of beauty. It’s easy to forget the beauty in the midst of a crisis. I find I have to constantly remind myself that I am blessed in many ways. I have already been through cancer once before and have been in remission for 6 years. I have generally good health otherwise, I have two kidneys and my tumour is small.

So now I wait for Thursday this week to see the consultant again, this time at QA hospital to discuss the operation and hopefully get a date for my operation so I can move one step closer to normality again.

We celebrated this victory, Ollie and Emily Rose and myself, by going to Zizzi in Winchester and having a meal, with the instruction of ‘have anything you like’. Bruschetta, and nuts, three, yes we all chose the same thing!, portions of wild boar meatballs and pasta and sticky brownie deserts.

It wasn’t so much what we ate but a chance to talk to each other about life, Ollie’s options, random stuff such as why bruchetta is basically tomato on toast, but tastes so good, and mess about with our cutlery to see who can hold a spoon on their chin the longest.

Little did the waiter know that this little victory meal was so poignant and memorable for us all. That we were celebrating the normality of life, because we could, and we wanted to grasp that normality with both hands and not let it go too soon. Onwards and upwards has never been a better choice of words, onwards to normality and upwards avoiding all the thorns we can see, but enjoying the beauty.

‘Some days are diamonds, some days are rocks’ – Tom Petty

It’s been a while since I had a cathartic verbal outpouring on here and vented my spleen. Mostly because I’ve been burrowed under a virtual rock, popping up occasionally to be sociable, gather more information and wait.

A month ago I hit a point where I had nothing left. No anger, no motivation, no passion, no will to push or fight the fact that I had been apparently lost in the referral system between hospitals.

I was originally given the plan at my consultant appointment that the tumour found was now probable renal cancer, and that a biopsy was not needed, I was to have a partial nephrectomy (part of my kidney removed) and had a choice of treatments to do this. Cryotherapy ablation which is essentially freezing the tumour into a ball of ice via rods inserted into the kidney, this is then thawed, and refrozen resulting in the tumour crumbling away and being reabsorbed around my circulatory system. The second option was surgery, of which I could have laparoscopic or partial robot controlled laproscopic removal of the kidney.

I chose the latter after researching all options. I wanted someone to have eyes on the tumour, not destroying it via ultrasound with the possibility of any smaller tumours that may not be detectable on CT scanning lurking in the shadows and then unleashing their grand plan of taking over my body.

Cancer is sneaky, elusive, sly and opportunistic and I wanted to ensure I gave it a run for its money by getting the surgeon to eyeball it to ensure it hasn’t made any sneaky moves since my diagnosis.

I was referred from Southampton General Hospital to Queen Alexander Hospital and was told I would have my case discussed at the next multi disciplinary meeting (MDT). After some waiting I decided to call to see what my progress was, to find out that I had been discussed at the MDT and the consultant at QA had decided he wanted a biopsy to ensure the tumour was not, in fact secondary breast cancer, which in some cases can sit dormant after my diagnosis of breast cancer in 2012 and apparently can reignite up to 10 years later!

The reason I hit a wall in my will to push for treatment was because I had already fought by then to find out what was going on, and why I had not yet had a date for an operation. I found out, by phoning, that the plan has changed, that the operation which was immanent after waiting 3 weeks, was not going to happen, and later found out through further calls, that I could be facing metastatic breast cancer (a whole different ball game) and that in the process of being referred to QA my case was caught up in a wrangle between hospitals as to who would do the biopsy.

I didn’t care who did it, I just wanted the weight of not knowing off my shoulders. I didn’t care that it was difficult for the consultant at QA to do it because, according to his secretary, he is in rarely in QA, due to working in different private hospitals, I just wanted answers.

I had already called several times to each hospital. I had been told ‘not to worry, some things are out of my control’ by one secretary, that the emails to refer me to anyone who could carry out a biopsy had yet been read, and that I was not on the biopsy list for either hospitals!

I was at my wit’s end. Having a cancer, or probable cancer diagnosis, was bad enough, let alone having to chase referrals and decisions about your own health. Having to deal with the fact that this could be benign, cancerous or even secondary breast cancer was just too much and I crawled into my black hole. I didn’t phone anyone, couldn’t be bothered with social media, rarely spoke to my family other than via messenger and spent a lot of time in my comfortable safe space which is my bedroom, in my pyjamas, binge watching Netflix tv shows.

I felt lost. I learnt that I was a woman who could cope with crap as long as there was a plan, but I was drifting in the world of no plans, a lost patient, waiting to see if someone would miraculously pick up my case sooner, to pluck me out of obscurity and place me on an ordered list, or push me into a robust plan.

My family and friends were telling me to fight and show grit, to be outraged, to get angry, to complain to patient liaison, to make an official complaint……….but I had nothing left. I was an empty shell floating in a sea of referrals, decisions and lack of knowledge.

I climbed out of it a little and saw some sense after I was called by a friend’s husband who is a urology consultant, as a favour, to give me perspective and to gather all this crazy, web-like, insidious thoughts I had, into a neat, tidy, rope in which I could cling to with more assurance and clarity.

I am eternally grateful for that 10 minute conversation, again learning that when you are lost, the simpleness of talking to someone in the know for even a short time, makes so much difference. Something I will most definitely use in my role as School Nurse. Taking the time to chat to someone, even if it is for a few minutes, can change so much for them.

I am also grateful that my mum recognised my inability to keep fighting and how, not just my issues, but also other factors in my family had collided at once, and had diminished my spark. She took matters in hand and called the specialist nurse to point out that there’s only so much a person can handle and that she was very worried about me. Within an hour I had been given a date for the next week to have my biopsy!

I work for the NHS and I’m very proud to be part of such a wonderful institution. I do not for one minute want to belittle or complain about the staff or the care I get. However, it is a simple case of equations: there are too many patients, not enough staff, not enough money and resources and this has dramatically changed in the 6 years since my last diagnosis with cancer. Patients have to fight and chase referrals and decisions, especially in the early days before they are part of the cancer treatment algorithm. I’m grateful to my mum for standing in for me to do that.

I’m also aware that throughout the last 6 years, the meaning of the word cancer has changed in the eyes of primary health care. It is rarely considered as an instant death sentence, it is seen as a condition which can be treated, removed or even cured at times. Yes, it is still sadly killing people, and some cancers still hold this weight, however, such cancers such as kidney cancer are seen as not just treatable but curable.

NHS staff, quite rightly have changed their attitudes to such cancer and have an infectious positive slant on diagnosis, however, they need to remember that without exposure to this daily like they have, this shift has not yet reached their patients and the term cancer is still extremely frightening to hear, especially when faced with the possibility that it could be metastatic cancer which has spread from its primary source. In essence, the understanding of how frightened patients are, is not always there. Some get it some, don’t. It’s personal and it’s intimate in its meaning, for each person it is built out of a delicate web of experiences and knowledge.

Such methods as phoning to say casually that they are considering secondary cancer, telling a patient not to worry, and carrying out a biopsy without sedation and being told by a nurse, it shouldn’t hurt, it’s only a small biopsy needle, really need to be thought about in the context of the diagnosis, regardless of how many cases staff have seen, if it’s a small tumour, if it’s a common cancer, if it’s more common now than a cold.

Each small, seemingly meaningless piece of information can have the effect of turning a life up, down and around and around. Spiralling out of control, taken off on a journey of frightening thoughts or having the effect of instantly calming, giving clarity and hope. This information is theirs to give, ours to receive and I have learnt so much about the rollercoaster that is a cancer diagnosis, and the small things that make a huge difference.

‘Unexpressed emotions will never die. They are buried alive and will come forth from later in uglier ways’ – Sigmund Freud.

This week I’ve learnt a valuable lesson. I’ve learnt something about myself that I had not realised until recently. I’ve opened my eyes to the fact although I was seen as being wonderful at dealing with my emotions and being strong during my breast cancer treatment, being inspirational, being a pinnacle of positivity. I kidded myself I was just capable of inner strength, that maybe I was a bit weird and just wasn’t very emotional. I wasn’t any of these things….I was just numb!

After what felt like a months of waiting, I was finally on my way to my first appointment with my newly appointed urology consultant to discuss the recent findings and a treatment plan.

I am not a stranger to such appointments, and assumed I would behave in completely the same way as I did when attending my breast oncology appointments. It didn’t once occur to me that, although I had been here before with the cancer thing, that the whole experience would be different in it’s entirety. I didn’t once think anything would be any different than it was the last time I attended such appointments. Until I walked, with letter in my hand, through the doors of Southampton General Hospital and it slowly dawned on me that C3 was not the Urology outpatients department as I had thought, but the Chemotherapy and Oncology ward!

My mind’s way of perverting my thought process was to convince me that the letter said ‘Urology outpatients’, but in fact it said ’Uro Oncology Outpatient’s’. I was dumbstruck as I stood with the appointment letter clasped in my sweaty hand at the doors of C3, and John told me that, yes, indeed this was the right place. He was amazed that I was oblivious to the words Oncology on my letter, and then, swiftly realised my mind-set when he saw the look on my face. Those letters printed with such apparent lack of formality, changed my mindset. I was no longer under the comfortable cover of Urology with possible cancer, I was now under the category of cancer with possible Urology!

It seems crazy now, after the fears I had let in from my hospital stay, and the rationalising that I may be facing cancer again, and in reality, nothing had actually changed. There were no statistics held up on a board to me, in Len Goodman style, boldly displaying my odds, there was no certainty delivered by the consultant that it was definitely cancer or benign, there was no change. The only change was my mindset, and the way I perceived the manner in which the hospital were defining me. I was now Sarah, not being seen by Urology with a possibility it could be cancer, but Sarah, being seen in Oncology, for probable cancer, by a Urologist.

It suddenly struck me that the pretty unimpressive, small shift in wording had derailed me. Why? During my time at Salisbury hospital going to consultations for breast cancer, I had never felt griping nerves in my stomach, a feeling that my legs would not actually have the strength to carry me from the waiting room chair to the consultation room, that any minute I could open my mouth and projectile vomit my breakfast without warning over unsuspecting patients in the same waiting area!

It was at that moment, that I realised………..

I had not let thoughts, fears, or even knowledge in before. I carried myself like a robot, I was on automatic, frozen, unseeing, unthinking, carried by a need to shut all that out due to other factors in my life at that time. I was living in Dorset, my children were 3 and 6, my marriage was on the rocks and I was living miles away from my family. I didn’t have room for fear, or the time to think. I didn’t even have time to be ill!

This time, I feel more connected, more aware, my eyes are open and I am listening (well, at times!). I am in a better place, I have support around me now I live closer, I have John, my ever diligent fiancé who is wholeheartedly protective of me and is my rock, I have my friends who were there for me before, however, I feel I can lean on them more now that I’ve let my guard down, and I have my family near and far, who this time, I will ‘let in’.

My choices were to have cryotherapy ablation, which essentially turns the tumour into an ice ball to kill the cancer cells, which is then absorbed by the body. Less invasive, with less complications. The other option is partial nephrectomy (removal of some of the affected kidney, but not all). More invasive, more chance of complications, but after intensive research this weekend, a higher long-term survival rate overall than cryotherapy and a chance for the surgeon to have the all important ‘eyes on’ of the kidney and anything else that may have alluded the CT scan. My choice is to have surgery, impressively carried out partially by a robot called Da Vinci!

The operation will be in approximately 4 weeks time, so for now, I have climbed out of my black hole, shaken myself off, made plans to regain some normality by returning to work for 2 days a week until the surgery, and started to batch cook for the impending ‘ mummy can’t cook right now as she’s had a chunk of her kidney out’ recovery time. As an aside, a fleeting thought recently made me wonder that if I carry on like this, by the time I reach 80 I’ll look like I’m made out of Gouda cheese!

The one thing I most definitely am not doing though is returning to the frozen state of watchful wakefulness. I will embrace the times when I feel raw nerves jangling like I’m due to go for an interview when I think of future appointments, when I wake at night feeling dread thinking ….’what if’, the overwhelming relief if it’s in fact benign and has all been a dreadful scare and the feeling that my heart will burst with pride for my children whilst experiencing the sour sharp pain that comes with uncertainty of what the future holds.

I will embrace it all, because, this way, I know I’m not burying it all. I know I won’t have a huge fallout randomly down the line, I know I am dealing with it. This time I will encourage the ups and downs, the glimmers of hope, the worries, the journey because I can’t shut it out again.

I have now realised, yes it is the same……..but it’s also different.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton