I bopped down the hospital corridor towards the Chemo Unit (listening to a bit of Adele) and started thinking back over this cycle of treatment. It’s not a good or bad news story. It’s a GREAT news story. Yes, there are a few side lines about niggly things, just to keep it real. Great news though; we can always do with a bit of that, can’t we?
Music – Music was back, yay! All a bit eclectic, and hey, that’s how I roll!
The theme-tune from Cheers: Where Everybody Knows Your Name, Gary Portnoy; On the Level, Mac DeMarco (calming and grating at same time); The Only Way Is Up, Yazz; Rapture, Blondie; An hour of Radio 1 in an afternoon; Right as Rain, Adele (transpose talk of lover with Myeloma; it works!)
Also gobbled up podcast S-Town, Serial Series 2 (Series 1 was great too).
Here’s a graph. I love a good graph, don’t you? I especially love this one as it shows some important stuff going in a mighty good direction. Cancer presence is trending down. My chemo response rate is trending up! Yeah, baby!!! I’m not fighting with Myeloma; I am guiding it to the door, hoping ultimately to close the door behind it for as long as possible.
The great news
My para-protein level, the indicator of those unwanted Myeloma plasma cells (now kicked to dust over the first two cycles of Chemo) is looking good, very good. My results have come down: from 40 g/l at diagnosis, up at 42 g/l when starting treatment, down to 17g/l by the early part of this cycle and by the third week, 11 g/l. The medical team look for (and the clinical trial requires for next step progression) a minimum of partial response (PR) by the end of the induction treatment (four cycles of Chemo). PR is a drop of 50% of presence of Myeloma indicated initially by the para protein level. The good news is that I had achieved PR by the end of Cycle Two! Also, the para protein level has kept heading in the right direction: down! I still have one cycle to go in this round so a great overall response rate seems so possible right now. And I am still gunning for 100%. I hope I am not too disappointed if 100% is not achieved.
The niggly things
It was a tough start to Cycle Three. I was feeling a bit low. On day one, Si and I attended a clinic appointment with my Clinical Trial lead. It was helpful, and he kicked off the conversation about the stem cell harvest. It was also awful. He went over the prognosis again: the incurable nature of Myeloma. Then he followed with the dramatic strides that have been made in the last two years with new drugs and better outcomes. They are better outcomes: people with Myeloma receiving treatment used to get three years, recently they were getting seven, and now the average is 8-10 years. Great strides, but still short, and I had trouble on that day hearing it all again. I wanted to focus on next steps in the treatment instead, not how long it may or may not ‘get’ me. I left feeling utterly drained and not overly well-informed about the cell collection as I had trouble listening to these points with loads of the other stuff in my mind creating noise.
While the scaredy needles seemed to get over their fear this month (Nurse L worked her magic), a strange rash appeared down my left arm (worse than the little bit I had experienced in early days of Chemo) and it hung about for a couple of days. No known cause at this stage and something to look out for again. My calcium level dropped a bit so I now take calcium tablets too. My urea and creatinine levels dropped for a week. These returned to normal after I focussed on keeping up the three litres of water a day and recognised night sweats might be dehydrating me a bit more than I had thought.
Long waits for Chemo occurred on a few days. One day was over three hours and down to a process issue; these kind of things happen sometimes yet are usually preventable. I gave what I hope was constructive and gentle feedback to the medical team. They were supportive, listened really well and agreed a plan of action. A Clinical Trial Nurse, M, thanked me for being an active partner in my treatment: for my feedback and follow up on things they have mentioned in the past, such as providing patient diaries and requesting new ones if they have not been received. Her comment felt genuine and I really appreciated it. I never want to overstep or cause additional work, yet my nose for process re-engineering and efficiency often rears its head, especially in the NHS. The NHS is awesome (free!) and could benefit from regular process review, especially as when used well, reviews and service/process development ultimately save time and cost. Hey, who has time to do timely reviews? More appropriate NHS resources required! Let’s hope Brexit doesn’t scupper that. Or the upcoming election.
Other great things; small and large
I attended a helpful webinar through MMRF that shared the latest USA understanding and treatments. Lots of promising diagnosis tools and new drugs are coming down the line that will hopefully be available in the UK by the time I need them, after my initial remission period lapses. I also attended a fabulous day at Kings College Hospital where the latest UK-based clinical trial information and outcomes were shared. We were given a tour of the labs in which blood and marrow are analysed, stored (at -196 degrees) and the clinical research facility. After donning the blue plastic shoes, hair bands and protectors to ensure we didn’t cause any contamination, we were taken into one part of the facility where we could safely view the highly-restricted areas and complex equipment – very ‘CSI’ (for anyone who has watched those TV programmes as much as I have). We learned about how contamination is monitored and prevented, and how studies of highly sensitive blood and organs are undertaken. Fascinating, and a real privilege to see ‘behind the scenes’ in this way.
My girlfriend B came along to Chemo with me on day 2 this month and it was so great to have her there. She was calm in a strange environment and we laughed together which was fab. Strangely, despite the circumstances, this day and another day on which we did meditation together and a third day when we made time for a great lunch date (unfortunately just before she left London; would have been great to fit in more of these) really stood out to me as special moments, quality time and very supportive.
We finally christened the table tennis table (Si’s birthday present). I am queen of the table; the presiding champion in the round robin between Si, my brother-in-law and me. Of course, were you ever in any doubt? Si didn’t like that and brought up other stories about me beating him at clay-pigeon shooting over ten years ago during another birthday present experience for him. Ooops! Although, wait until Mum gets here, she tends to claim table tennis crowns!
On the last day of Chemo this month, I wore a dress and two people told me I looked lovely. What a great start to the day. Especially as I felt very tired that morning. Choices again. I could have worn tracky bottoms and a top like I did the day before and that would have been fine. I needed a pick-me-up. A dress and makeup was a helpful move. After all, I felt better. It was great to dance in on the way up to Hospital, feeling the fabric move around my bod. And hey, it resulted in compliments – the dress, not the dancing! Worth it, that little bit of effort. I might not have the energy to do this next time and that’s ok. It was lovely to grab the moment on that day.
Thank you to you, the readers; there are now over 800 users on the Psyching Out Cancer blog.
Psychology – Reflection
Life is a daily, weekly, yearly roller-coaster of good, difficult and neutral events that come and go. Our response to each event – small or huge, the attention we give each, the meaning we add, the willingness to accept the unchangeable – all dictate how we well we cope with the rollercoaster. Our ability to pause, notice, and choose a response, facilitates how much we stop and enjoy the good times, and ensures the more difficult times have less impact on our day to day lives and long term goals. Sometimes though, we forget to pause or find it difficult to pause; this is where in addition to knowing our triggers for unpleasant reactions, Reflection is crucial.
Reflection is defined as serious thought or consideration. In psychology, reflection often involves a therapist reading or saying the client’s words back to the client so that they can hear for themselves what they have said and evaluate the logic or reasoning behind their own statements. You can also be your own therapist with reflection. Self-reflection can be referred to as examination and contemplation of our own thoughts and behaviour; helping ourselves to hear and evaluate.1-3
There can be no knowledge without emotion. We may be aware of a truth, yet until we have felt its force, it is not ours. To the cognition of the brain must be added the experience of the soul.
Arnold Bennett (1867–1931) 4
The lessons I have learned, and psychology skills I have applied, this month have often been difficult to remember to use in a timely manner and I have needed time to notice and understand my reaction and needs. The post reflection lessons have been transformative and confronting; they have led to open, honest debate with myself and communication with others such as in my previous post ‘Killing Me with Kindness’.
All in the Mind, a BBC Radio show presented by Claudia Hammond, is a fabulous resource for learning about mental health (links below). The show often hears from people with experience of mental health difficulties, charities working in this space, expert clinicians, and academics and researchers who explain the latest evidence about incidence and treatment, and debunk myths. In one of the recent episodes, evidence was presented about the power of expressive writing about your experiences and the positive outcomes that were experienced.
Writing can be, for some, a great way to facilitate reflection. Whether it is keeping a diary, or writing a letter to yourself or another, writing about how events made you feel emotionally and physically, the thoughts you noticed, what you were curious about or wondered about in terms of the event, yourself, the other person’s thinking, feelings, reaction, motivations. It can be so helpful to ‘not to make the person wrong’. Instead, focus on the event or behaviour and how it made you feel, how you thought it might have made the other person feel, with curiosity and compassion. Recognise that you may have their feelings and thoughts wrong; be careful not to assume and instead be curious. You do NOT have to send the letter. You do NOT have to keep the letter once it is written, though you may find it helpful to send or re-read them; only you can decide this.
For those that don’t like writing, a Dictaphone, a voice recorder, or even an app that converts your voice to word or pages can be used.
If neither of these appeals, taking time out simply to be and think about a past event, day, week, a particular period, can be useful. Notice all those things above, and also notice what worked well, what worked less well, and what you would do differently or not do differently.
Alternatively, and I highly recommend this approach (which can be done alone or in combination with the others above) solely focus on taking time to sit, put yourself back into the event and be with whichever emotions, light or strong, arise. Allow yourself to feel them, deeply, outwardly with tears, or anger or another response, if that is what arises, without judgement of yourself or anyone else. This type of reflection helps your body and mind to fully experience and process events together. Regular reflection, not rumination where negative thoughts are given repeated attention, but regular curiosity-based reflection, can help process strong emotions.
All regular reflection can help your mind and body notice when similar events are happening again, often earlier than usual, and sometimes even in the moment. This observation then allows for pause and choice of response; helpful or unhelpful, one that serves you well or doesn’t serve you well.
Remember, after reflection, be kind to yourself; your responses and emotions within reflection are normal. If you feel upset or angry afterwards, take 5 minutes or more to do something enjoyable even for a few minutes; take a few deep slow breaths; tell yourself you are ok, safe, good enough; read a magazine; do one yoga sun salutation; make a cup of coffee; close your eyes; do a body relaxation exercise, a tai chi movement, a back stretch or something else relaxing and fun to bring your arousal level down before trying to get on with your day.
Reflection is an important skill for maintaining good mental health and one worth investing time in practicing: through writing, dictating or focussing on your experience in a curious way that allows you to fully experience your emotions.
Cycle Three – done. A roller-coaster and many highlights of great news. Onwards with Cycle Four, the last month of Chemo before the next phase of treatment. Gosh, the time has gone quickly.
BBC – All in the Mind. http://www.bbc.co.uk/programmes/b006qxx9
All In The Mind, Episode including benefits of expressive writing (15 May 17) http://www.bbc.co.uk/programmes/b08n2wcz
Gibbs Reflective Cycle (in Dye, 2011), University of Cumbria (2016)
1 Oxford Dictionaries https://en.oxforddictionaries.com/definition/reflection
2 Alley Dog Psychology Glossary https://www.alleydog.com/glossary/definition.php?term=Reflection
3 Psychology Dictionary http://psychologydictionary.org/self-reflection/
4 A return to the use of emotion and reflection. Helen Demetriou and Elaine Wilson
Images: B, Me
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.