Lockdown Love In

I understand that we are amidst sombre and serious times. The daily death toll is a reminder of the severity and cost of this pandemic. This regular drum beat of the news can numb us to the sheer number of real people who are being killed by Covid-19. Despite the sobering reason for lockdown, there are quite a lot of things I like about it.

Life is simpler, which is saying something from someone who has had to ‘shrink’ her life and clip her wings considerably in the last two years. It’s just a bit calmer. Everywhere. So many fractious family moments were about getting out the house with the right stuff at the right time. Now none of that (Zoom call log in’s aside).

Appointments and meetings that were previously ‘impossible’ to do over the phone are now slotted neatly between bread making and home schooling. rather than dominating a whole day of family/work life. I realise that sounds so idyllic, rest assured that both usually involve unmet expectations and swearing! When I do have to travel to an appointment like today, it is a breeze. A 3.5hr journey to the trial hospital reduced to 1hr 20mins; parking right outside; patients only in the hospital and a lot less of them and previously critical parts of each treatment cycle no longer required or streamlined. Above all, a lot more civility and appreciation of each other. All this has massively improved my quality of care and life.

Why did it take this, to challenge and shift the status quo?

I have been in communication, innovation and change most of my working life. I understand about entrenched ways or working, about stuck patterns of thinking. This is why i have to push clients to think differently. I ask them to role play made up scenarios, to consider the opposite of every aspect or assumption of their business or to use ‘imagine a world where….’ cards to stimulate them to activate the side of their brain that is creative and unaccepting of ‘how things have always been’. When I wrote the ‘imagine a world where…’ cards I had examples like ‘we all have to work from home’; ‘there are no schools’; ‘food is rationed’; ‘poorer paid work is more respected’; ‘brands matter less’; ‘people are grateful for small things’ and ‘our local communities are revived’. I sometimes had difficulty encouraging clients to imagine one of those things happening in their life time and I certainly didn’t imagine all of them and many more happening together in mine.

As an individual and a consultant, I naturally look for a more efficient way or a better experience. I do challenge ‘the way things have always been’. I’m restless, so I like to find ways around, ways through (avid blog readers may have noticed this trait of mine!). This is not the way of large corporate organisations or institutions like the government or the NHS. However, stuff that was deemed tricky or impossible in the world of cancer treatment, palliative care and counselling is all being turned upside down and delivered by digital means.

Needless and unchallenged processes, protocols and paradigms, once set in stone have dissolved. In days or weeks Government, food service logistics, local councils and multiple grocers have collaborated to deliver boxes of food and essentials to our vulnerable population. I’m considered one, my disabled, housebound, 89 year old mother-in-law who lives alone is not – I’ve worked around this since (she will make better use of the 1970s throwback tins than we will anyway).

Virtually overnight a joined up NHS app allows chemists, doctors’ surgeries and patients to interact in lightening speed. I no longer wait in a phone abyss to make an appointment with my over stretched GP to get a repeat prescription. I then don’t wait in a germ ridden waiting room or queue up at the chemist to find my items are yet again out of stock (and this was before lockdown and Brexit!). Now I effortlessly tick a box on my phone, while swotting up on the definition of a ‘relative clause’. Then a few days later, when the item is in stock a lovely kind person appears on my doorstep (just like the shopkeeper from ‘Mr Ben’, as if from nowhere), with the complete order of my prescription. It is so God damn efficient. Although, I’m sure my pharmacist and GP miss my incessant visits.

The BBC (another great institution I hope we will cherish post this pandemic, rather than take for granted), have collaborated with educational brands like White Rose Maths, Twinkl and many others. They have produced fantastic structured resources and lessons for every school year over the Easter holidays. Something that would no doubt have taken months or years to negotiate copyrights, access and IP pre-Covid and the home schooling crisis.

Even zoom socials are better for me. Forget covid, any cold or cough germs have previously put me in hospital. My white blood cells too scarce to fight off common everyday bugs. I’m often too tired to last the duration at adult events, or muster up the energy to get ready. Zoom avoids a lot of this I even skipped lipstick and the prosthesis with one good friend!

Aside from the practical benefits of lockdown, there are some psychological ones too. I feel less obligated to do things and this makes me feel less guilty. I also feel less like I’m missing out on my fulfilling career, overseas travel and the exciting adventures that social media would have me believe ‘everybody’ else is enjoying. As I said on 19th March, it is great to welcome the rest of the world into my uncertain world. Even if its only for a brief while.

Imagining the unimaginable and dealing with uncertainty are definitely skills that advanced cancer patients have been trying their hand at mastering for longer. It is still tricky, but in lockdown we tend to spend less time longing for an exit strategy and more time enjoying the moments. Maybe this is because our exit strategy from uncertainty is pretty final.

28th April 2020

Time for Palliative Care?

Feeling pretty low today. A full day of appointments and scans in various hospitals. I think I’ve been triggered into a bit of a pensive mood by the text that came through about my psychologists appointment. It’s in the main hospital in palliative care not the main cancer centre.

Not dying to go through these doors – no pun intended!

The word ‘palliative’ has slightly freaked me out.

Intellectually I know that palliative care can happen at any time in your cancer journey, but it’s typically associated with end of life. It doesn’t help that when you google the definition. The other material or searches are about things like ‘the death rattle’; ‘do people’s eyes close when they die?’; ‘Does death smell?’ (Yes it does I have been up close and personal to that with my beloved Nan) and ‘end of life care options’.

Turns out google or their previous searchers aren’t up to speed with the broader definition of palliative either. It’s not just me then.

Reflecting on all of this, I’m wondering aren’t we all trying to ‘live as well as we can until we die’? If you’re not, don’t wait for stage 4 cancer to do it!

Back to my mood. I’m also feeling concerned. This is the closest succession of PET-CT scans I’ve ever had. My scans are so historically unreliable we want to do some additional ones to see if the picture is clearer and if I am on or off the trial and treatment programme.

So after my psychologists session, I’m waiting in line for yet another radioactive injection for my PET-CT, then to talk about family counselling and then for a CT scan. All in 4 different locations and 3 sites.

There is no way on earth that CT scan is not going to show disease progression. I can feel the secondary tumour under my arm, it’s making carrying my bag hard, there is also a suspected local reoccurrence near my mastectomy scar. This latter one I can feel and see and yet it hasn’t shown on any of the scans. Even the sonographer saw it and felt it with her finger, but nothing on the scan. Not big enough.

I’ve been bringing it up at every appointment. I know my body. I massage those massive scars across my chest every night and every morning so the muscle and skin doesn’t lock up further. All the layers of fascia that separate muscle from organs and bones are melted together by radiotherapy. This was once described to me as putting several layers of cling film on top of each other and then popping them in the microwave.

You get the picture.

Anyway back to the little lump. I know what my chest feels like and I know what is new. It was new in June and it’s still there. Just a bit bigger. It might be scar tissue or fat necrosis (think this means dead cells from fatty tissue). But I would bet a lot, perhaps even my life, that it is not.

I hope I’m wrong.

‘Have surgery, cut it/them out’ I hear you cry. It’s just not that bloody simple. I wish it was.

If I’m taken off this trial there is still no targeted treatment (or cure, that’s long gone) for Triple Negative Breast Cancer. The only way to get anything that MIGHT slow the spread is to find another clinical trial. Those of you that know me will not be surprised to know I have one in mind. BUT here’s the tricky bit: in order to get on a clinical trial you need a big enough piece of measurable disease. If we do surgery I won’t have this, but I won’t have the cancer lumps either. If it has spread elsewhere, we need something systemic (whole body), like more chemo. If we do surgery, this will delay more chemo. It will also be another big op. to recover from which will eat into quality of life in the short to medium term (which might be all we have).

It’s such a conundrum!

All my years in innovation, problem solving, insight and consulting are being stretched to their limit. I wish I was working on someone else’s problem not mine.

My gut feel says surgery. They are also talking about and recommending (until the latest growth) radiotherapy in the contralateral (left) side.

My gut still says surgery. I want us to get a good look at what is actually there, not what it looks like is there. I’m a reality girl. I just hope either surgery or rads are still on the cards.

I can’t bear the thought of just waiting for cancer to pop up and say ‘hi guys, I’m over here now, you can’t catch me!’.

I’m the meantime while contemplating all this I am rammed in my eighth carriage of the day and wishing I’d worn my ‘cancer on board badge’. Although wearing that feels like admitting defeat and I look and feel physically good and well today. I just have a scrabbled head and a growing sadness in my core.

Time to grab life with both hands again and get distracted for a few days…