health, holistic health, ovarian cancer

The Necessary Grief of the Life Unlived

My cancer markers rose again.

Four months in a row.

Slowly rising, creeping upwards, no longer stable and far from dropping.

It’s not good news.

My treatment is no longer as effective. The trial I fought for is no longer holding things at bay. There is a crack in the dam. The dam is still there, yes, but it’s no longer as effective at holding the tide back from crushing me as it once was.

Was I naive to think that it would keep things at bay longer? Was I overly hopeful?

I thought I was realistic. I thought I had accepted and understood the odds, that I realised how lucky I was that it had worked for as long as it had. Yet my tears tonight tell a different story.

They show the hope that’s been lost, the fear, the anger, the sense of defeat in a battle I never even willingly engaged in.

And while it’s far from over (I am still on the trial treatment and it is still doing ‘something’ even if that isn’t as much as it once was) this rise marks a turn in events.

No longer do I feel like I have the upper hand. No longer do I feel in control. No longer do I feel like I have a grasp on what is coming next.

It’s the fear that hurts the most. The fear of more bad news, of more pain, of less options, of death.

It’s the fear of breaking other people’s hearts, of no longer being able to keep a brave face, of losing my sense of self to this insidious disease.

But most of all it’s the worry that I took the time I had for granted; so busy telling others to live like they are dying that I forgot to do it myself.

I’ve had many great adventures yes but did I love enough, did I laugh enough, did I open my heart to the deep vulnerability necessary for true connection?

I don’t know. But I plan to spend the rest of my days finding out and making sure.

Today marks a change, a shift. Tonight it feels painful. I feel deep sorrow and grief for the life I thought I was ‘supposed’ to have. Tomorrow I will welcome a new day, a new phase, a new beginning.

But, for now, I grieve.

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“The Cancer Whisperer”: Chemo 4 – Day 20

Today I was feeling much more tired than normal…a sacrifice I’d made after some early birthday celebrations with friends last night. Which, as a side note, was a lovely evening and exactly what I needed. The restaurant even surprised me with a birthday cake and balloons 💜

Anyway….I digress…

As a result I wasn’t up to doing much today and so spent most of the day reading a new book that I’d bought under the recommendation of a friend – “The Cancer Whisperer” by Sophie Sabbage.

Well, the book is incredible…I’m already nearly half way through it!

Since my diagnosis I’ve read lots of books about cancer. These range from books written by Drs or researchers or even survivors. This book was different though. It was the first time I’ve read a book by a person who still has cancer. A person who, like me, is living with stage four cancer and is aware that, medically speaking, her cancer is ‘incurable’.

More importantly, however, despite this (or perhaps because of this…) she shares my positive outlook on life.

It was so inspiring for me to read her story and her approach to her diagnosis. I felt every word on the page spoke to my soul. Whilst reading her words, I was no longer the ‘unique case’ my oncologist and surgeon describe, but instead I felt like I was reading the words of a kindred spirit.

There is so much comfort in knowing that there is someone else in the world with stage four cancer who isn’t giving in to nor fighting (a term I loath!) the disease but is instead letting it allow her to grow as a person whilst healing her life. I am sure (or at least hope) that there are many others who share our outlook but, whilst I have read the positive outlooks of people who have recovered from stage 1, 2 or 3 cancer, stage 4 cancer patients don’t often appear to share this outlook…or indeed share their story…with others.

The thing that resonated with me most in her book is the emphasis she places on taking control of your disease and taking ownership of the decisions being made. This is also encouraged by Kelly A Turner in her book “Radical Remission”  and something I do without thought – I mean why wouldn’t I want to know everything there is to know about my illness whilst also being involved in the decisions about my treatment and care. However, I am becoming increasingly aware that this is not something I share with all cancer patients and this unsettles me. How can people be expected to heal without all the information? Sometimes people don’t even want to know what stage their cancer is – I can’t relate to this at all. I want to know everything…I mean everything!… about my illness and possible treatment. However, when I recently asked one of the surgeons if I could see my scan results I was told that I was the first person ever to ask. Ever?!

I’ve found that whilst my Drs are initially surprised by my calm and rational (and often emotionally detached) questioning, they also appear refreshed by the opportunity to talk openly about my illness with me in a way in which I am made to feel welcomed as a contributor rather than a bystander. However, I still have the impression that they hold back, perhaps unsure if my ’emotional detachment’ is denial or a front – it is in fact neither and merely an ability I hold to detach myself and reserve dealing with the information emotionally at a later stage (usually once I am home and talking through the facts with my husband). I hope that as I progress through my journey that my Drs become more comfortable with sharing information about me with me (ironic really when you think about it).

I truely feel that one of the most valuable lessons from my journey is to take total ownership of my health. I can only hope that in the future integrated, person-centred treatment of cancer patients will have become the norm in cancer care.

Love and light, Fi xx 

ovarian cancer

Why I hate the term ‘service user’: Chemo 4 – Day 9 (Reflections)

In my ‘pre-cancer’ life I had a career working to improve the health and care services people in Scotland receive. Some would call me a researcher or a designer or a project manager but really the title wasn’t important – what was important, for me, was ensuring that I was making recommendations for change that were what people wanted and would benefit them in the long run.

In this work I’ve always had a primary desire to improve health services; to give people ‘in the system’ a voice and ensure that their care is ‘person-centred’ – in short, ensure that they are in control of their care and maintain their voice.

When working in this field I’ve often come across the term ‘service-user’. This is a term used to describe ‘patients’ so they don’t feel labelled and feel they have an active role. But it’s always made me feel uncomfortable…

Who decided ‘service-users’ liked that title better than ‘patient’…my suspicion is it was likely us ‘designer’ folk in our effort of giving them a voice. The irony…we are just labelling them without asking them what they think and in doing so we may just be taking away their voice even more.

Let me explain…

In my experience when I worked with people receiving health care (aka patients) they, generally speaking, didn’t care what they were labelled as so long as they were listened to.

Now I am a ‘patient’ I can honestly say I would HATE to be labelled a service user!

Yes I use some services – I am a ‘service user’ at Amazon.com, at Tesco, at my local post office – but I am not a service user of the NHS! That implies choice. Or more simple, it implies desire.

I am a patient.

And I’m glad to be one. Again let me explain…

When in the hospital the label ‘patient’ offers comfort. It offers reassurance of my role. It makes me feel safe. In those hours when I am receiving active care in a hospital environment the term patient gives me control over my care. It creates the boundaries between me and the nurses; between me and the doctors; between me and the surgeons. It also allows these boundaries to be challenged and moulded as we work together shaping my care and getting to know each other as people.

  

The term ‘service user’ doesn’t. It doesn’t clearly define my role. It suggests I’ve chosen to have the care, that I’ve chosen to have cancer in the same way I’d choose to shop at Amazon.com over another online store.

Now…this may be hard for people to get their head round. How can the term ‘patient’ be more empowering than ‘service user’?

But it’s not really about the term. It’s about the term being used in the right place at the right time.

Is it right to be labelled as ‘patient’ all the time? No? Do I want to be a ‘patient’ when I am out for dinner for example? No? Then my label may be ‘wife’ or ‘friend’. When I am doing my food shop? No? Then my label may be ‘consumer’.

Only when in a hospital environment receiving care is my label ‘patient’. So what term should be used the rest of the time?

Person.

I am a person.  

A person who has cancer.

A person who is married.

A person who has siblings.

A person who loves nature.

A person who loves cooking.

A person who is female.

A person who sometimes needs to receive specialist care but who also sometimes doesn’t.

But, ultimately, just a person…

If we are really in the business of designing for ‘peole’ then this is the only label that is acceptable. 

I want to see a design community that embraces the notion that you don’t design service improvement with, for example, designers, doctors, nurses and patients (or service users…if you are still inclined to use that term…) in the room.

You design service improvement with a range of different experts of their own lives and life experiences in the room. You give each person the opportunity to share their experience. You value each experience equally. You don’t label people by their experience because their multi-coloured life experiences make their expertise entirely unique to them.

At the start of this post I said that what mattered most to me was “ensuring that I was making recommendations for change that were what people wanted and would benefit them in the long run”. Those ‘people’ are all the people involved. We can’t provide good health care, for example, that only benefits the patients, it has to benefit the healthcare staff too or, quite simply, it just won’t work.

Ultimately it has to benefit the ‘people’.

So, if you are working in this field and you want to make change…start spending less time on what you call the ‘people’ and more time ensuring you are involving and listening to(!) the right ones.

Fi xx

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The benefits of exercise… 

After years of doing research and writing research papers I’ve now been given the opportunity to be in one…Macmillan are doing a national study to look at the affects of exercise on cancer treatment and prognosis.

To do this they have employed and trained personal trainers across the UK to work with cancer patients to develop a specialist program of exercise. In Scotland they are working in Aberdeen, Glasgow, Dundee and the Borders. Patients involved in the study will be given 12 free sessions and then unlimited sessions for a low fee each month for the rest of their lives. In exchange their fitness, response to treatment and side affects to cancer and treatment will be monitored every three months. The results of the study will be published by Macmillan later next year. It is hoped that the evidence will demonstrate that exercise has a positive impact on all aspects of a cancer patient’s care, their response to treatment, and whether or not they relapse. If proven effective, this scheme will be spread across other areas.

I feel both honoured and privileged to have been asked to be a part of this study. Not only will it allow me to bring back one of the joys in my life but it also gives me an opportunity to play an active part in the growing research in the importance of providing holistic patient care. More importantly it enables me to be a part of shaping what holistic cancer care may look like in the future.

I am really excited about this opportunity and hope to see some good results in recovering my fitness, strength and lung capacity.

Watch this space…

love and light, Fi xx