Up, down, round and round

‘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.