Six and Out
Paloma, my nurse from Madrid who'd deal with telling patients that there would be, for the second day running, a six hour delay due to a problem at the lab, pulled out the cannula with expert precision. I’d been one of six lucky ones with no delay as my immuno juice was ready to go! A cotton wool swab was taped in place with the single handed expertise of a farmer hand rolling a cigarette while still ploughing a field in his tractors. “That's it, you’re done” and I was. Six months of chemo and immunotherapy was finally over.
In that instant, the place that had held me, cared for me, saved me and nurtured me back to health, was now just a room where other people go for their treatment.
As I stepped into the lift I hoped for one last bidy beep but there was none.
Jon Bowlby, father of Attachment Theory, way back in the 1950’s introduced the world to the term ‘secure base’, the space around the caregiver that the infant feels safe in. Around one year old, a crawling child ventures to the edge of their secure base, where a process kicks in that makes the child pause and look back to check if it’s okay to go this far.
This process of ‘have I gone too far’, is hardwired into each of us. Evolution cruelly allowed those without it to wander off where they were eaten by predators.
As we grow we simply apply the same process to every rule we learn. Rules given by parents, teachers, sociality and our own lived experience including every Homer Simpson style moment of ‘Doh!’
It’s a process of inhibition that shuts down in order to protect. If we venture too far beyond the imaginary boundary given by the rules, we feel discomfort. If repeated over time we feel broken. How can we not feel broken when we keep breaking the rules? We conclude we are broken, and in this way ‘inhibition and brokenness can be interchanged with the process’s most common name: shame.
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| Hospital wristbands made into Xmas decoration |
As I left UCLH I felt shame. It felt like a loss of confidence and a feeling that the rug had been pulled from under my life. Until then, I had a sense of moving forward within ChemoLand, the regular blood tests, consultation and chemo treatments have provided structure, like a scaffold around a building. Now it is gone, and I’m not sure if I’m physically or mentally broken. I was expecting this, I’d heard about it many times from clients I’d counselled at the Nightingale. It’s part of scansiety (scan + anxiety).
My next scan in mid January is a PET scan (nothing to do with Whisper the cat), where I get injected with radioactive sugar which is the favourite breakfast of cancer cells. Many will remember the early research for this in the 1980’s as seen in the adverts for Ready Brek. As the cancer cells chew away, num num num, and they visibly glow even if they’re dressed in a Parker snorkel coat while riding a chopper bike!
The PET scan will be the first solid evidence as to whether the last six months of treatment has worked and I’m cancer free. Cancer Free is the modern term for ‘in remission’. The term remission almost suggests it will come back. Cancer Free is in the moment, a joyous celebration of the now.
I’ve found it difficult choosing which term to use. Cancer Free suggests it’s gone forever, which may be true, but I’ll always be heading towards the next scan etc. Remission has a truthful ring about it. The probability is that my Lymphoma will return in 3-8 years and I’ll start a second round of treatment. That's right, you’ll never get away from this blog!!!
At the risk of sounding like one of those annoying life coaches [Deffo not Sandra] who trot out the phrase ‘Emotion is just energy in motion’ (excuse me while I cough up a fur ball), I like the idea that re-mission is about restarting the mission. (another fur ball anyone?).
Apart from this discombobulation (my most favourite word ever), there have been few side effects for round six. So many of the scary symptoms have become part of my normal. Of course I'll feel ill for a week. Of course my skin will flake off my head with the steroid treatment. I just avoid Italian restaurants to avoid parmesan confusion. I may have used that joke before! I'm really not sure where lies the cut off point for my chemo brain excuse.
My perspective on immunity has shifted towards being complete confusion. Fliss had covid as I had my final treatment. I even had a tiny thin red line on my covid test. I've had two doses of flu-like bugs and constant sniffles and yet I'm still here! Does that mean my immune system is functioning quite well in spite of two drugs designed to switch it off? ....and does that imply the drugs haven't worked? (Catastrophising keeps giving) On one radio program a doctor made the simple point that if our immune system were switched off fully, we would simply rot like dead meat! Extreme, but we're bombarded by the constant noise of this supplement, super food, diet etc. etc. blah blah blah that will miraculously boost our immunity. I doubt there is anything other than a nominal effect that's only detectable under laboratory conditions. I do believe that living well, eating well and adopting a positive and pragmatic mindset has a huge effect.
At this point it's worth giving thanks for all the unsolicited suggestions of diets, foods and religion I received over the last six months. I’m ambivalent. On one hand they're an expression of genuine kind intentions for which I'm genuinely grateful. On the other, speaking as a vulnerable-ish person, I ask if you’ve used my vulnerability to project onto me your world views regardless of mine? First prize goes to the nurse who, while taking a blood sample, told me “Only God can heal”. Really? My hopes are resting on Chemotherapy and a bunch of professionals who believe medicine can heal! I’m sure she finds people quite receptive to her religion when she’s holding a needle in their arm! Does phlombology come from the Latin meaning prick? I accept this may be some residual anger being expressed :)
After a couple of weeks of basic celebration through the bacconistic rites of food and wine followed by more food and wine, often without the food in between, I went for a run. My expectations were very low. Hopefully I would be able to get to the end of the street, which is about 150m, and back. No exercise for six months plus the effects of chemo killing off new cell growth including muscles. The marathon I ran in 2022 seems a dim and distant memory. I prepared to be extra kind to myself. If that was all I could do, so be it, it would serve as a starting point.
As I left the safety of the front door I consciously began to tune into my body for any warning signs while I ran. I was amazed that once I got going, I just stayed going. My diesel engine approach to jogging once again proved generous. I kept going for four miles! Up and down the hills of Ally Pally. Through the Paddy Power sponsored arch of the World Darts Championships where I wondered if they could add inserting cannulas as a secondary event, god permitting!
This is what I call my small circuit of Ally Pally. There's a bigger one that includes Highgate and a large one that takes in Hampstead Heath. I had no difficulties with breath, body or bones! I could have gone further but building things up slowly are the orders of the day. It felt wonderful. This was me reclaiming my life and proving that I hadn't slipped too far down the slippery slope. It suggests not only a full recovery, but a future where I can do more than I've ever done before. I'm not sure if there's a word meaning the opposite of Catastrophising but I humbly suggest Thriveosising.
Taking of words: I often find myself explaining the difference between Fortitude and Resilience. Fortitude is as if nothing affects you. Resilience is my ability to bounce back. I have certainly been affected by my trips to ChemoLand, but the run showed I could and had bounced back.
Obviously for the next two days every muscle from my hips down hurt like hell :)
Finally-ish by way of offering an excuse for the delay in getting this blog out, I've been busy.
Two weeks of jury service that was thankfully curtailed after four days; a backlog of DIY that needed to be done by mum's visit at Christmas; A meeting with the Nightingale Cancer Support Centre to firm up the Bereavement Group that I'm starting in January and to set the ball rolling for another round of Mambalsa their. By the way, the Nightingale have offered me quiet friendly support throughout ChemoLand for which I'm extremely grateful and very proud to be returning to their team. It seems only yesterday that I was interviewed as a novice counsellor with zero client hours! That was four years ago and about a 1000 client hours later.
I've missed many so please forgive me if I've missed you out.
I'll do an update after the PET scan but until then....
Happy Christmas
and a Happy New Year
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