What does ‘stable’ really mean?

Heavy duty adult training wheels 18 stone

Yesterday I finally got my CT results from 3 weeks ago.  They are stable. But what does that actually mean? I don’t know how to feel about that word. It doesn’t excite or sadden me. It’s neutral. I feel like I’m in a holding circle outside Heathrow, not able to land or fly off. 

‘Stable’ definitely doesn’t ooze positivity. A political situation in a far off land that becomes ‘stable’ doesn’t have you rushing to book your next holiday there. Stable pension funds or economies are safer, but not a cause for celebration or a spend up. Riding a bike with stabilisers is an interim phase between falling off and riding properly.

I guess I’d rather not be falling off. 

Pretty much every appointment I’ve had in the last 20 months has been bad news or unfolding bad news or seemingly positive news that belied my clinical representation or turned out to be bad news due to a scanning error. 

Let’s just say I brace myself for bad news. I prepare for it, I seek to interrogate and understand it. I then accept it and move on to forming or executing the next plan of attack. I’m a problem solver by nature and profession. I’m an action junkie. I don’t know how to be around stable? I’m not organising a party and I’m not researching alternatives  or mobilising the NHS. It feels indifferent and passive and I don’t like it! 

My RECIST (response evaluation criteria in solid tumours) report shows a 1mm reduction in the size of my target lesion (the largest lymph node in my contralateral axilla). On 12th Sept scan it measured 19mm and on 19th Nov it measures 18mm. It’s going in the right direction, not enough for partial response (PR) to be classified, but not enough for progressive disease (PD) either. But here is the rub. That same 12 Sept scan was originally measured and reported by my previous hospital and the lymph node in question was reported as 16mm. 

Same raw data, different reporter. 

So based on the original report I have a 2mm growth.  In addition the same node was reported twice in the summer as being complete response to treatment (CR) and it measured 0mm! Yet I could still feel it and it felt like it was growing (and it was). See why I don’t trust scans! 

Now let’s go back to clinical evidence – or in lay terms – eyes and fingers. The lymph node in question feels smaller than it was when I started this second trial (that’s good right?), but it also feels like it has coalesced with the other enlarged lymph nodes to form a skinnier (technical term) yet longer mass.  So what are they actually measuring? 

On top of all of this my skin metastasises are growing. I have 3 reasonably significant ones and two tiny ones that I expect no one will acknowledge, but I know they feel exactly how the others did at the start. The biggest skin met has been biopsied and is definitely triple negative breast cancer cells. And yet I had a private ultrasound of my chest wall last week and the monographer said ‘there is nothing there’! I had to stop the sonographer and say I presume you mean on the scan as you can plainly see and feel them on my chest!  Of course that’s what she meant, but it made me feel like I was making it up! Even my 7 year old says ‘Mummy is that another cancer lump?’ And ‘that one is getting bigger isn’t it Mummy?’ How do I deal with ‘stable’ in this context? Even my daughter wants to know when I will switch to a treatment that actually works! 

She doesn’t get ‘stable’ either. 

A loved one in intensive care who is reported as stable doesn’t fill you with joy. You take a breath, you might be relieved, but you aren’t out of the woods. I guess a terminal cancer patient is never ‘out of the woods’, so maybe ‘stable’ is as good as it gets. I’m restless, I’m impatient, I get it.

In my case ‘stable’ is pretty hopeful. Dying’s on hold for a bit longer. Christmas can be ‘stable’ not disrupted by new treatment or adverse reactions. 

It’s still too passive for me. But I think that’s my nature. I perhaps need to turn off my ‘high alert’ button and give my para sympathetic system a rest over Christmas. Changing treatment over the festive period is never ideal (I did that last Christmas), so perhaps I need to take that very deep breath and try and ignore my sixth sense for another cycle of this wretched chemo. 

Right time to start taking those horse tablets. 

11th December 2019

The Path Beyond the Haze

I’ve been a little quiet in the last few weeks. There’s been a lot going on in and outside my head. I’ve not known where to start and didn’t want to be trite.

It’s not appropriate to discuss it in detail here, but we have been having a long term battle with systems that support our children to understand themselves, be understood and reach their potential. This has been a focus long before my cancer diagnosis, but it just got a whole lot more urgent due to me feeling like time was running out to fight their corner. Let’s just say it was on my bucket list to get done.

One day I hope my kids will see that using my energy and our money for their diagnoses will have more longevity and impact than a trip to Disney. I am determined that they are aware of their emotional and practical needs, how to ask for help and support to create and take opportunities in life.

My mum was always there for me (and still is), she put me before herself or others on so many occasions. Sometimes this was intense and difficult for me and other people in our life, but above all I have had the privilege and knowledge that I am loved immensely and unconditionally. I want my children to know that too. Like my mum I want to help them in practical ways, but also to help them know themselves and be proud of who they are. I hope they have already felt that, and will remember it fondly with gratitude. I might not be there, so I want all the people around them to do their best to nurture and support them to be strong individuals.

Actually they already are strong individuals, but I want my diagnosis to make them both aware of their vulnerabilities and the power of resilience. I continue to believe that my attitude to cancer’s challenges will hopefully give them values and lessons that will endure long after I’m gone. I’ve also always believed that it takes a whole village to bring up a child and we need this now more than ever.

It’s one of the many reasons I am open about my journey. My broad and varied support team are as invaluable to us now as I hope they will be if and when I’m gone.

This post is taking a surprisingly sentimental direction.

I’m anxious about my CT results.

I’m waiting in clinic to see an oncologist. The path forward is a bit hazy at the moment. I don’t mind tough terrain, I just want to know the plan. I’m hoping with equal parts that the current chemo is not working and is working. If the latter, I stay on my current regime. The former continues the fight for immunotherapy or any treatment that slows the spread.

I’ve waited 3 weeks for these results and it’s been two months since my last scan results. A lot can change in that time.

Where am I now?

I’m now on the last day of Cycle 3 of Capecitabine. I’ve been on the oral tablets 14 days on and 7 off for 9 weeks. With multiple anti-sickness tabs and a strong routine around food, I’ve managed to keep them down. The other side effects are pretty grim. The skin on my hands and feet is red raw and swollen, peeling in places and inflamed.

My fine motor skills are being challenged as my finger prints are smoothed out and the fingertips are bolbus. This is further exasperated by lymphoedema on my right arm and a suspected DVT. My iPhone doesn’t recognise my fingers and even hitting the right keys and letters is a challenge. My feet are sore after walking or standing for too long and they are burning hot.

I’m not letting any of this stop me walking or typing, but it makes it more tiring. I’m annoyed with my failing body. In fact what I am annoyed with is the chemo is effecting me adversely, yet it doesn’t appear to be working.

I wrote in a previous poem that I’m happy to poison myself in the now to see more future. With each chemo that fails this journey seems more futile and the path ahead less clear.

10th December 2019