October 18th, 2017 by Janine
Last week and this week have been soooo much better. Less tears. While the black cloud of overwhelm still lurks, I feel calmer, less irritated by everything, and more able to make a healthy choice in the moment. Five minutes, have been my saviour.
I’m no perfect human, no magician. Getting back on track isn’t easy. Getting back on track – isn’t instant. It’s not about righting wrongs overnight. It’s not about becoming superwoman again; getting into action with everything on the ‘crazy to do list’. It’s not about suppressing the negative thoughts, ignoring the fatigue or pretending to be happy.
Last week, my best achievement was deciding to commit. Commit to doing, what I know to do, to lift low mood. Then doing it, for five minutes at a time. Yes, five minutes. Anymore time is a bonus and not mandatory in anyway. A big commitment? Yes!
In the face of depression, difficulty concentrating, fatigue and everything I acknowledged in last week’s blog, yes, making ANY decision, taking ANY action, takes something. Some days, brushing my teeth, having a shower or putting on clean clothes is a commitment. It takes valuing myself. It takes being in the moment, one step at a time.
I’m worth it.
I’m worth investing five minutes, once per day or eventually five minutes, six times a day, to do the things that help and help me, to feel more like me. It’s not easy and I know I go on about it, being compassionate with myself. I try to not buy into my ‘I’m not good enough’ belief, when I don’t manage five minutes one day or I only (loaded unhelpful language) manage five minutes a day. This is super important and the key to keeping the commitment to doing five minute wonders.
On my first day of commitment to five minutes of healthy, helpful actions, I brushed my teeth, washed my face, and got dressed – tick. I got myself up the hill, to my blood test appointment – big tick. The rest of the day passed somehow.
On my second day of commitment of five minutes, I managed to go back on to the website I’d had so many problems with and order the muscle builder protein recommended by the Nutritionist. Its arrived and I’ve tried it. It tastes ok and hopefully will work well for me!
It feels good to get back on track with healthy eating; one step, one five minutes, one day at a time. This doesn’t mean I beat myself up for the sugar filled chocolate bar I had yesterday while at Chemo. It means I patted myself on the back for eating well for the rest of the day, for not eating any more processed/refined sugar all day and for achieving my calorie count target for muscle building.
On my third day of commitment I managed to go to the gym! The gym! I went for five minutes on the cross trainer; I stayed 20 minutes. I was very tired but felt pleased that I had gone. It felt good, to feel pleased, about something. I went for another five minutes, two days ago, stayed 45 minutes and had more energy. I loved the sense of achievement, of being good to myself, doing what I know is important for me to do; build muscle so I can manage the cancer and the treatment as well as possible. It was ok to feel tired later that day. I felt calmer which was a bonus and good to notice.
On another day, for five minutes, I thought about my values, aspirations and those things I used do that gave me pleasure. I looked at whether I had been taking any actions in these areas. I wrote a list and planned some five-minute actions – not all of them for one day; one five-minute action per day. Yoga is near the top of the list. Up until a few months ago, I used to do this, a lot, each week, at home mostly, with the wonderful Adriene on YouTube. Interestingly, five minutes of yoga hasn’t made it back into my world yet. That’s ok. I don’t have to do everything all at once. Maybe next week will be the week I commit to five minutes of yoga, on one day, and then another, and possibly another.
Yesterday, I did something that really makes me feel joy. I had an Italian language lesson. I didn’t worry about whether I was smartly dressed or had make-up on; my teacher doesn’t care. She cares more about whether I am having a chance, making the time, to listen to Italian every day; she doesn’t make me wrong when I haven’t. I loved it. I felt genuine pleasure when getting something right and even when I got something wrong and understood why. I have learned Italian on and off for years (more off in recent years as academic work took over) and it feels great to be doing something that is so important to me. This was a powerful step forward in lifting my mood. Now I can plan five minutes of listening and Italian language practice every day. It doesn’t have to be more. Seriously, a five-minute commitment works wonders and is much easier to contemplate than an hour! If the hour of practice comes at some stage, well that, is simply a bonus. If I don’t do the five minutes every day that’s ok; every day that I do it, is a good day.
Overwhelm still hovers. By the end of last week, I noticed I taken on too much. I tried to allow time for rest, quiet, peace yet the time in between five minutes of healthy action didn’t always or often, feel restorative. Planning five minutes of deep progressive muscle relaxation is now on the list. Sitting outside for five minutes and deep breathing is also on the list. The list doesn’t have to rule the show; it’s just a tool to remind me of possibilities for five minute wonders. Things to try that I know have worked well in the past or may work well now and in the future, if I give them a go and commit for FIVE minutes!
A fine balance, this doing versus not doing too much. Time for simply being is important too though when it rolls over into dwelling, rumination and avoiding, it no longer is being. Socialising and avoiding withdrawal from others is super important for lifting low mood. Getting back into the world is key. Five minute excursions outside my house to the local café, newsagent, supermarket, anywhere where I need to navigate around and be with people for five minutes; it all helps me reconnect with the world.
On the flip side, when friends suggest a catch up, getting myself there is really hard some days, especially on those days when I feel like I just want to rest, sleep and keep sleeping. Staying only five minutes might also seem strange but when I frame it like that, telling myself ‘I’m going for 5 minutes’, it helps. Letting my friend know upfront that I hope to stay longer but a short time might be all I can do, is perfectly fine too; good friends understand. Right now, too many commitments each day or on consecutive days is unhelpful; overwhelm can loom large. I’m taking it a little slower than I was, before this patch of overwhelm hit. Now the dark clouds are slowly lifting, I am taking my time with it, giving myself time and space to get back to feeling like me. I try to remember that saying ‘No’ or consciously choosing to NOT ‘do something’ can be a valid action too.
Five-minute actions, being social in a manageable way, doing things that make me feel good, feel pleasure….that’s what I’m working on. Smiling is back on the menu. Five minutes of smiling behaviour can work wonders too. Remember this isn’t about pretending to be happy. This is about your body and mind experiencing a smile: physically, chemically and eventually, emotionally. Right now, it’s a practice, a behaviour, not a spontaneous event. I’d forgotten about the power of smiling behaviour and that’s ok. I’ll do that five-minute wonder, today. In fact, how about now?
Acknowledgements;
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer, Symptoms and Side Effects Tagged with: Behavioural Therapy, Commitment, Depression, Five-minute, Mental Health, Overwhelm, Psychology, Wonders
October 4th, 2017 by Janine
Hello Blog. I’ve missed you. I’ve been writing to you, in my head, a lot. There have been many opening paragraphs that have never made it to fingers and keyboard. Today is a beautiful day, helped along immeasurably by clear blue sky. Today is the day I put the last month to bed, put it into the past and leave it there, take out the learning points and not allow past negative events to colour my future.
I really wanted to say I haven’t forgotten you and provide a brief update…a reality check…
Health-wise. I have been good on the Myeloma presence front; it’s still low. I have been knocked for six coping with a compromised immune system. Two viruses back to back, an extended chemo/bronchial style cough, even worse sleep patterns (didn’t think this was possible) and fatigue, weakness and low motivation to do anything…these have left me reeling with a very low mood. I’ve felt like a patient, an invalid, more than ever before in the last three to four weeks. Especially when I end up in bed for days, need to avoid being on public transport and wear masks more often. Concentrating to write seemed like an impossibility. I’m here now.
Despite my low mood and fatigue, I managed to push ahead in small chunks with some of the ‘to do’ list. No wonder I’m overwhelmed. Have you ever felt like your ‘to do’ list doesn’t have any small, mundane admin items on it? Instead it is a long list of huge, life-impacting topics that all require maximum brain power, planning and the ability to make decisions – something that is very, very elusive if you are even slightly depressed.
My list has included (though not exclusively by any means);
Finance. How to finance the next few years, mortgages, budgets, investments, trying to find independent financial advisors, palliative care costs, home care costs…the list goes on).
Clinical Meetings. I’ve been chasing meetings with clinicians to get a fresh, up-to-date view of the realities or at least their best guess on what my next few years will look like; how mobile I’ll be, how much treatment will be needed, whether I can do, plan for, bother costing out, some of the life passion things that are important to me – travel adventures, skiing, swimming, road cycling. Securing these meetings has been a challenge and ongoing for weeks now (still unresolved) all because I want to see the original clinician I met and not my trial lead. Dr L is both a realist and optimist. We have worked together for months now. It feels intensely important to hear up-to-date details from someone else, so that it lands in my head with clarity, so that Hubby and I can be exactly on the same page. This is why I am trying to secure a meeting with Dr B. He was the one who was honest about worst case scenarios, the very real lesions in my spine and possible paralysis if treatment was not started. I need to hear it again; where I am and where I’m not, what I must do. I need pointers on how to live. Do I maximise the next two years assuming they are my best or plan pensions and assume I’ll live a lot longer and with mobility? Therefore, what will I need to finance? I know Dr B will find this tough – I’m under 50 after all. I really need his help with this.
Work. How to work, earn income, contribute, have energy to work. Figuring out how much I can work, what work should look like so that I can strike a balance between treatment, time for doing things that are healthy, fun and will give best chance of prolonging life expectancy and support good quality of life.
Academia (My Legacy?). I worked on my first paper and was rejected for the second time by one journal. I’m now working out how to revise and resubmit to another journal, getting ready for the all so common rejection again while visualising acceptance. I’m also working on a second paper, one a senior academic in my viva encouraged me to publish.
Nutrition. I lost too much weight. I had to stop my super careful eating. I tried to reintroduce dairy. I felt worse. I stopped the dairy. I couldn’t get enough calories in without eating constantly which is impossible if you want to do anything else in life! I reintroduced the odd treat (good quality bacon and cake once, twice per week). I felt better and worse. I was advised to put on lean muscle and get my weight up. My weight is up to 63.8kg. I feel good that my weight is up and bad that I’ve introduced things that welcome cancer into my terrain again. I feel unable to control things. I have no appetite and then I’m ravenous. I find it hard to do food balance. I want it to be healthy all the way or…I can’t entertain, the ‘not at all’ option, it feels irresponsible. My nutritionist has recommended a medical protein powder, not high in calories but specifically designed to help create lean muscle for people losing weight due to illness. I try to order it. The site won’t let me. I contact them. They don’t get back to me. I cry with frustration. I finally ask the Nutritionist to sort it out. She does. I haven’t had the energy to try again. I will, this week. I need to feel back in control. I miss enjoying food, I used to love it.
Last and by no means least, Parents and Friends. Spending quality time with Mum and Dad; how to do that, when to do that, how to have the energy and good mood for that. Ensuring we don’t feel like flatmates co-existing under the same roof and make sure we make the most of the time we have together – how?. Sounds easy but it’s not. A great, precious, long, hard-to-adjust-to five months (not sure how that happened… and I laugh that Mum and I laugh about that now). Yet as it spins into the last half of their stay, it is quickly feeling like I’ll look back and it will have gone quickly…
Chemo. This crazy, demanding to do list is all with a backdrop of six days of Chemo, recovery days where I have felt worse than on Chemo days, many many days when I have just wanted to hide under the duvet with the cat for company and stay there for weeks.
Low mood. I’m in it. Up to my eyeballs. Depressed. I’ve been resisting it. Resisting acknowledging it but I’m there now. I feel demands on me everywhere, a sure sign of low mood and overwhelm for me. A weekend away with hubby last weekend, staying at a very generous friend’s home near the sea, culminated in a roller coaster ride and frequent mishaps. From misread maps, and ten minute walks turning into a 40-minute wait in the rain and taxi, to random laughs (singing Delilah with a bunch of strangers in a gorgeous restaurant with fabulous view), deep tonic breaths of sea air, cocktails and a feast, before spending Sunday crying uncontrollably (on the train, at a restaurant, in a cab, just standing, sitting, in the shower, trying to put makeup on; I gave up, behind my mask, walking in the street, everywhere, leaking.) I’ve been so withdrawn. Haven’t wanted to be around anyone except hubby. And have not been a fun person to be with when we have been together. Trying to be practical, talk about future, plan, create with him; this just exacerbated difference in wants, needs, timeframes and how difficult these discussions are. Overwhelm took residence. Overwhelmed. I landed. Here. Rock bottom. Time to acknowledge my situation even more than I have already. I have cancer. Its terminal. It’s Sh*t. It has turned my life upside down. It’s created extreme intensity across all areas of my life. It’s ok to be overwhelmed. It’s likely to happen many times over the next few years and I’ll be alright.
Off track. All the things that help overcome and prevent low mood have fallen off. I’ve fallen off the track. It’s time to get back on now. This low mood feeling won’t disappear overnight. I do know what to do. Start small, just start. Compassion. Compassion. Compassion. Work on basics; begin exercising again, for 5 minutes, an hour, then a few times per week. It doesn’t have to be all at once. The mindfulness and meditation have slipped to once per week. Get it back to daily. It can be five minutes, 10 minutes and eventually longer. Put a good sleep routine back in place, get up at the same time, get rid of the mobile from the bedroom, breathe, use progressive muscle relaxation. Order the protein drink. Get some good music back into my life; it’s been missing. Look for the positives.
Today is a good day. There is a blue sky. I’ve just been to the gym. I’m doing fine. To coin the essence of a phrase my fab friends use on their date nights and that they wisely borrowed from Julia Roberts… If I forget to tell you later, I had a great time today.
Acknowledgements
Images: Me
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Finance and Cost, Psychology for Cancer Tagged with: Compassion, Cost, Depression, Finance, Legacy, Mood, Nutrition, Overwhelm, Psychology
August 22nd, 2017 by Janine
Hooked up
My blood spurts everywhere like a regular Fright Night or Halloween movie. The nurse is trying to put a cannula into each arm, a bloody big cannula, much bigger than my normal (ha ha) Chemo cannula. The nurse is new to this treatment and seriously nervous. Great. I’m not in the mood today. The mood. The mood where I am happy to be part of someone else’s learning curve. I’m just not. Now she’s made a mistake and there is blood everywhere. My blood. My very, very, precious blood.
Another nurse pounces with a clamp and gets everything back under control. For now. Except, I feel sticky. My leggings and legs are spattered with blood. The pillows and bed coverings are no longer pristine white. Stressed, I blurt out, ‘I don’t want to be anyone’s experiment’. The nervous nurse (NN, my nickname for her) looks horrified. She reassures me that I am nobody’s experiment. Her body language and voice sound like she is trying to convince herself that everything is OK. I think ‘I can’t afford to lose any more blood; get me someone who has done this A LOT’. But I don’t say this out loud. I hope it, instead. I calm down a bit and give NN, a smile of, ‘it’s ok’. It’s not OK but I figure I need her to be calm. Everyone makes mistakes. In the grand scheme of Myeloma treatment, this wasn’t a bad one (so long as I don’t end up needing that runaway blood).
I am in the Apheresis unit, finally all wired up (ready for ‘take off’?) to a clever centrifuge machine (very CSI) labelled 3OJO (MOJO with a 3? A machine with 3 times the MOJO?). Anyway, this machine specialises in taking blood out of one arm (Vampire-esq), separating out plasma and stem cells and then giving what remains of my blood, back to me, through the other arm (Angel-like). Genius! my niece would say.
I try to relax. The machine’s sound reminds hubby of ‘‘beedie beedie’ so we nickname it, Twiki, and completely ignore the OJO’s in the end. Do you remember the TV show called Buck Rodgers? Twiki is a silver robot (cute but with unfortunate haircut) known in the show for saying ‘beedie beedie’ to everything. Very effective. I’ll think I’ll use it.
Twiki with a lot of mojo (Stem Cell Collection machine)
All the fancy stuff Twiki monitors
I’m quite intrigued by my blood and its component parts…hanging in a bag next to me is the plasma, a funny yellow colour and next to it, slowly, salmon pink (apparently, that’s a good colour) stem cells appear. Also on the line in bags are saline (isn’t it always?) and an anti-coagulant. My lips begin to tingle strangely and I feel a bit faint. I let the nurses know. They have warned me this can happen. My calcium level is ramped up and I’m lowered down a bit in the bed. A song pops in to my head…Blood, Blood, Glorious Blood…There’s nothing quite like it…My Glorious Blood.
Boredom kicks in for hubby soon after arrival, I’m not very talkative today. I can’t sleep because to help collection along I am required to pump the stress ball, all day, only taking breaks for a few minutes every 10-15 minutes. Hubby checks out all the bells, whistles and knobs on Twiki and marginally resists touching them (knobs after all) and is now entertaining himself by dancing on the spot. I’m trying to work out which music he’s listening to because he occasionally is singing out loud, unintentionally I think, and boy his lyrics are dubious! The nurses and I catch a look and laugh. Glad he’s got a day job! Though I’ve secretly always loved his dance moves. I still can’t work out which songs he is listening too. Turns out he’s immersed himself in 70s and 80s and he’s running through Hall and Oates hits (would never have guessed). We share headphones and have a laugh with the past. Today is turning into a retro day.
I arrived at 8.30am and it’s now 5pm and I too, am very bored; so ready to be out of here. I’m waiting for lab results to come back and say they’ve taken enough stem cells. For the last four days, I’ve had G-CSF injections that stimulate the stem cells to move out of my bone marrow and into my blood so Twiki can collect them. This is preferential to the other option of having them collected directly from the marrow (painful, long, more chance of complications, I suspect).
The injections have some seriously weird side effects; they cause pain from inside my bones (ironically similarly to the way Myeloma does…there are so many ironies with this overall treatment process, seemingly making things worse in order to make things better!). At random points, shots of pain would pulse from my rib cage or my pelvis, take my breath away and stop me in my tracks. It would usually be gone within 5-10 minutes and then be back again 10 minutes later or half an hour later or whenever it decided!
Lab results this morning told me the injections had ‘done their thang’ and the detectable level of stem cells in my blood (CD34+ test) was well over the count required to go ahead with Twiki’s collection manoeuvres. Thank goodness. The collection target is 7 million stem cells per kilogram of body weight and I hope it can be done in one hit, today. The results come back and they are good but I still need to rock back up tomorrow (and take another injection). They have collected 5 million. A few more are needed. Hubby and I walk home slowly. I feel shattered.
I’m baaackk! The next morning is a funny affair, no more escaping blood and instead a new approach. Yesterday’s senior nurse seemed to be cautious in approach, going slowly and setting things up so blood clotting was avoided. Today’s senior nurse explains she prefers to deal with problems when they arise and ‘we’re going to go for it’ and monitor everything carefully. Funny, I thought coming in two days in a row for the same treatment would ‘be the same’; a standardised process. I hadn’t factored in the human element and the nurses’ different strategies. Today’s target is 3 million stem cells per kg of body weight so info is plugged into Twiki and I lie back and ?? think of England? More like think ‘please please collect everything needed quickly’. It’s an all-day affair again. My potassium and calcium levels need propping up so I go home with extra meds to add to my ever-growing list.
The call comes through an hour later; they’ve collected another 5 million. Excellent that’s 10 million stem cells altogether. They’re sent off for cryopreservation (storage in liquid nitrogen at some crazy temperature, −196°C). I’m relieved. Maybe that’s enough for three transplants in the future. Maybe I’ll live longer thanks to these. If that’s the case then this last week has been a tiny investment; completely worthwhile.
Turns out from discussions with my clinician later that three transplants are not routinely given at the moment and there is no evidence supporting their benefit. Instead, the transplant team would usually spilt the 10 million stem cells gathered into two larger lots, for each of the two transplants. Supposedly there have been some benefits found for higher amounts of stem cells being used per transplant.
Oh well, you never know. By the time, I need the second one maybe they won’t need as many cells after all and I can eek out another transplant. Or my transplants will be so successful I won’t need a third one. Or it will be what it will be, completely in line with current evidence and practice. I’ll worry about that when it happens.
As part of the clinical trial I am on, I’ve been randomised to another four months of chemo (Carfilzomib, Cyclosphamide and Dexamethazone, half the Dex dose than in the previous four months) rather than an immediate transplant. I don’t need to worry about the transplant details right now unless something goes a bit wrong and the Myeloma comes back with a vengeance sooner rather than later (after all it is always going to come back). I crash for two days (the cat loves it) and feel really shattered for the week.
Post collection rest
The good news about my Myeloma is that its presence in my body after the first four months of Chemo has dropped; the IgG kappa paraprotein level is down to 6g/l after being as high as 42g/l. It’s not quite the 100% response rate I was hoping for but it is damn good. It is not usual for this rate to rise again for a year. I’ll have regular tests and jump on it if it decides to buck the trend.
I’m a bit low in mood and I think this is mainly due to low potassium and not knowing what the next phase of treatment is. Dealing with uncertainty is tough and coping well with it, ebbs and flows. That’s normal. I have talked about this in previous blog posts. I’m also nervous (my turn). I have a pet-ct scan coming up this week. Will the radioactive sugar stuff sent into my body find new lesions in my bone marrow, new weak spots or confirm that the treatment has worked brilliantly so far?
Maybe it is a good time to explore my relationship with illness and health. I can step out of project mode for a moment, round one of treatment has been accomplished. Now, is as good a time as any to face asking myself, in a more structured way, what it means to have incurable cancer, what it means to be ill. Which factors, which thoughts, beliefs, feelings and sensations are influencing my health behaviour, my coping…and not coping?
Psychology
One established psychological and behavioural model for explaining how we think about, respond to and manage threats to our health is Leventhal’s common sense model of self-regulation of health and illness1. Here are three of the concepts at the heart of the model.
- our perceptions of our illness directly influence our coping strategies, which in turn influence outcomes.
- our perceptions and resulting mental representations of illness and health threats have two parallel processes, a cognitive representation (our beliefs about; our identity, causes, consequences, timeline, coherent understanding and control/curability of our illness) and an emotional representation (our fear, distress, anger, worry, depression, guilt or other affective states). We use these mental representations to make sense of threats to our health.
- we actively engage in problem solving by testing coping strategies (aimed to manage fear from emotions, and danger from cognitions), and checking whether the coping strategies have worked, to help us reach goals (e.g. to overcome cancer, to survive as long as possible, to overcome anger and be the person we wish to present to the world/think ourselves to be despite illness or to be well enough to play with our children every day)
The model is one way of explaining how we go about reducing the tension that arises between holding on and letting go of important values and goals as we come under threat from ill health, disease processes and treatment impact and side effects. Figure1 below shows this in a bit more detail.
I thought I’d use this model to explore my thinking, beliefs, biases and assumptions about my current health. If you are managing pain, chronic illness, cancer or caring for someone who is ill, I hope you find it helpful to ask yourself similar questions. I encourage you to notice the thoughts that pop into your mind without judging them; they may surprise you. When I work with clients who are living with ill health using this model, they often discover something that they had no idea was influencing their sense of self, or making them feel worse or they discover a rule they had imposed on themselves, based on an unchallenged belief about what it means to be unwell or to be going to hospital or taking medication.
Where to start?
I start by asking myself;
what does ‘health’ and ‘being healthy’ mean to me?
what does being ‘ill’, ‘ill health’, ‘being sick’ mean to me?
Do these concepts mean different things when I think about myself versus when I think about others?
What does it mean to be diagnosed with cancer? With Myeloma? What does it mean about me that I have been diagnosed with cancer, with Myeloma? If it was my partner or a stranger with the diagnosis how would the meaning of having cancer/Myeloma be different?
Figure 1. Hagger and Orbell’s (2003) schematic representation of
Leventhal’s (1980) Common Sense Model of Illness (CSM).2
What do I ask next?
I explore a range of questions with myself about the mental representations I have about being unwell and under threat from cancer. While I work through each question and consider my answers, I also explore how my responses make me feel and what I will do to cope with the event and the feeling.
Stimuli
What am I experiencing?
What are my symptoms? (e.g. pain, fatigue, breathlessness)
What is telling me I’m unwell? (test results, pain, reduced mobility, hospital appointments)
What do I know about my illness?
Where is my information coming from? (external: medical team, support groups, google, other patients; and internal: physical and mental experiences)
What are my symptoms? (e.g. pain, fatigue, breathlessness)
What is telling me I’m unwell? (test results, pain, reduced mobility, hospital appointments, calls from medical team)
What do I think about where the information is coming from?
Cause
What do I think has caused my illness? Do I think any of it is my fault? Someone else’s fault? How has my illness come about? What do I think about the cause/s?
Consequences
What are the consequences for me, of my being diagnosed with cancer? From being unwell? What will I be able to do and not do? Will my life change? How will my life change? How will my relationships change?
What are the consequences for others of my being diagnosed with cancer? From being unwell? How will their life change?
Control /Curable
How much control do I have over what is happening to me? Over being sick? Over getting well?
How much do I think and believe my illness is; curable? able to be overcome? able to be managed well?
What do the consequences of the illness (e.g. likely outcomes, treatments, having to have chemo, a transplant, hospital visits and beyond) mean about who I am? what I am? My capabilities? My sense of being a woman? A daughter? A wife? A lover? An academic? A clinician? An exercise bunny? A coffee lover? Looking at all the aspects of my sense of self what does being ill, having cancer mean for each of those and who I am? No change? A change? For better? For worse?
Timeline
How long will I be ill? Will any changes and consequences be temporary? permanent? If my life changes will I be able to change it back once I am well or coping with the illness? Will it be the same as before?
Emotions
In addition to any coping strategies captured while gathering responses to the questions above…
How do I feel overall, right now, today?
How do I feel about being unwell? How do I feel about having cancer? How do I feel about each aspect above; the causes? The consequences? My sense of self? The controllability? Curability? How long I’ll be unwell? How do I feel about each of these? How do I feel about my thoughts and beliefs about each of these?
Coping strategies
In addition to any coping strategies captured while gathering responses to the questions above…
How will I cope? What am I trying? What makes me feel better? Feel worse?
What will I do? What will I avoid doing? Will I ask for help? From who and where will I ask for help? What will I practice thinking? Not thinking about? Where will I put my energy? What will I focus on? Avoid focussing on?
What emotions will I allow myself to express? Are there any that I am not happy to express? Why?
Appraisal of coping so far
What has worked well so far? What helped the coping strategy to work well? What hasn’t worked well? How did it not work well? What were the outcomes?
What do I want to change, try next, no longer try?
Working through these questions and using this type of model is challenging to do alone and isn’t something that is likely to be done and dusted in one sitting or even one day. It may take time to make the enquiry of yourself and find your answers. Notice the answers that pop into your thoughts, into your head. The answers may be scary sometimes, difficult to acknowledge or leave you feeling upset and distressed.
It is important to be kind to yourself during this enquiry. Its ok to take breaks. Its ok to feel distressed after noticing the answers. It’s a good idea to do something nice for yourself after working through these questions. These are difficult questions for anyone to look at, let alone anyone who is living with ill health or a life-threatening health concern.
Remember the aims of making the enquiry is to
- understand how we are making sense of our own health, ill health, diagnosis and health journey
- notice the factors influencing both our coping strategies and our appraisals of the outcomes from our chosen methods of coping.
- identify coping strategies that are likely to be most useful (complement our treatment and enhance our behaviour and management of illness, Myeloma) and drop the strategies that don’t work so well
Ultimately, by bringing our mental representations into our consciousness, our awareness, we may be able to pause and challenge some of them, more easily accept others, and create and foster new helpful health representations.
Many patients perceive they can stand extreme toxic Chemo therapy when they also hope and feel that it may result in a cure.3 There is no cure for Myeloma so how do Myeloma patients, how do I, stomach Chemotherapy? Do I stomach it because I hope it buys me time for living and time for a cure to be found, or buys me less pain, less discomfort, more quality of life? How am I managing fear control and danger control? What are my representations of illness? How vulnerable am I? How motivated am I to take self-protective steps? How easily accessible is my motivation? When is it easy, when is it difficult, for me to do the right things, to look after myself, adhere to medical advice, and adhere to the other complimentary advice I have chosen to follow?
Watch this space – I’ll post my answers over the next week or so to give you an idea of what this type of enquiry might look like…and then I’ll talk about what you might do with knowing your answers – how bringing the answers into your consciousness can help us to better manage the challenges that face us, illness based or otherwise.
Right now, I need a break so I only have one answer for you…
Beedie Beedie.
References
1 Leventhal, H., Meyer, D. and Nerenz, D. (1980). The common sense model of illness danger. In: Rachman, S. (Ed.), Medical psychology, Vol. 2. pp. 7–30. Pergamon, New York.
https://www.academia.edu/259452/The_Common_Sense_Representation_of_Illness_Danger
2 Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology and health, 18(2), 141-184.
https://www.researchgate.net/publication/250571403_A_Meta-Analytic_Review_of_the_Common-Sense_Model_of_Illness_Representations
3 Cameron, L. D., & Leventhal, H. (Eds.). (2003). The self-regulation of health and illness behaviour. psychology press.
https://books.google.co.uk/books?hl=en&lr=&id=P3UoIuANmrIC&oi=fnd&pg=PR8&dq=The+self-regulation+of+health+and+illness+behaviour.+psychology+press.&ots=ARDdFKnVmY&sig=hU9R0fsNauKIs04RB3iezy-yAyA#v=onepage&q&f=false
Posted in Myeloma Treatment, Pain, Psychology for Cancer, Symptoms and Side Effects Tagged with: Apheresis, Cancer, Clinical Trial, Fatigue, Harvest, Myeloma, Para Protein, Psychology, Randomisation, Stem Cell Collection, Therapy, Transplant
June 13th, 2017 by Janine
I have learned a lot about generosity over the last few months. Generosity is something I now realise I have made difficult for others at times and I have not always felt comfortable, when in receipt of it. Generosity can be a strange thing. It can feel like receiving a compliment: pleasant, appreciated yet also sometimes awkward. Awkwardness can depend on how often or intensely delivered the compliment is, and how much I believe it is well intentioned, genuine or even believable. Most often, generosity, offers for help, people taking the initiative to think about someone’s needs and meet them without asking, is very much appreciated and immensely supportive and loving.
Other times though, over-generosity is experienced. This is generosity where what I might be saying about my desire or needs isn’t heard, or is heard but ignored in some way. It can feel disrespectful and invalidating, and take away my independence. I can then be left with conflicted feelings of guilt for not being appreciative enough and annoyance at not being listened to, or believed, about knowing my own needs better than another. It occurs to me that older adults or people living with learning or physical disabilities may feel like this on a frequent basis. This feeling hasn’t often happened to me yet, though has occurred often enough to finally make me stop and think, about how I might impact others when trying to give or be generous. It has especially made me think about my relationship with my parents and extended family regarding giving. It hasn’t always been easy to work out how to give in a way that meets everyone’s preferences or budgets (so people are not left feeling embarrassed or like they need to match the budget when being generous themselves) and still leave a lovely sense of giving, and an appropriate sense of pleasure and gratitude in the receiver.
My logic about it making sense for me to pay for something, during times when I have earnt more or been on a favourable exchange rate or simply wish to be generous as a way of showing love (like feeding people), doesn’t always fit with others desires to pay their own way, use the monies they have put aside for exactly this type of expenditure and retain control over the product, service, experience and spending for themselves. Ironically too, these are preferences I also value and wish to exert when someone is being overly generous with me. Of course, talking about it honestly is a good remedy and preventative measure; one that will be put to the test in upcoming months as Mum and Dad visit. The last thing I wish them to feel is undermined or disrespected in any way.
Generosity is not all about money or gifts, it can also become too much when it involves doing things for others. Doing things that another person doesn’t want or need, or doing something that only partly fits a person needs, can be difficult to receive. The receiver can find themselves having to manage the other person’s feelings; how to be grateful and appreciative while considering whether anything is said about ‘please don’t do that again’ or ‘that’s so generous and unfortunately I can’t use/eat/keep it’. Instead of feeling helped and supported, the very person the giver wished to support, can be left feeling with ‘another thing to do’, ‘anxious’ or ‘overwhelmed’ and at worse wanting to withdraw from and push away a person or others’ offers of help.
Generosity’s foibles
Studies show that there appear to be many motivational, cognitive, and situational factors that influence helping behaviour and altruism1. Giving and receiving is not as simple as we might think; arousal and emotions are involved. Both givers and receivers don’t always get what they hope for.
Whereas giving a gift out of guilt is linked to the giver feeling more of a connected relationship, receiving a gift, given out of gratitude, is linked to feeling a more connected relationship. Giver and receiver experiences can be very lopsided in each generosity interaction.2
Similarly, to selfishness, too much selflessness may lead to rejection. It can be viewed by receiving others as undesirable, causing discomfort by highlighting gaps in their own virtues or be deemed to be socially rule breaking.3
Summary
Generosity is a curious beast, worthy of reflection and application of open communication to ensure it doesn’t slip over from loving support to being unhelpful and disrespectful. Hopefully my understanding evolves over time and becomes easier, more balanced and my levels of giving become appropriate and intuitive.
Acknowledgements
1 Dovidio, J. F. (1984). Helping behavior and altruism: An empirical and conceptual overview. Advances in experimental social psychology, 17, 361-427.
http://www.sciencedirect.com/science/article/pii/
2 Chan, C., Mogilner, C., & Van Boven, L. (2014). Gratitude, Guilt, and Gift Giving. NA-Advances in Consumer Research Volume 42.
http://acrwebsite.org/volumes/1017574/volumes/v42/NA-42
3 Parks, C. D., & Stone, A. B. (2010). The desire to expel unselfish members from the group. Journal of personality and social psychology, 99(2), 303.
https://www.ncbi.nlm.nih.gov/pubmed/20658845
Editorial Support: Stephanie Kemp
Illustration: Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer Tagged with: arousal, Cancer, emotions, Generosity, Myeloma, Psychology, Receiving Help, Reflection
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).
Medical Update
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
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.
Summary
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.
Great News
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.
Resources
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)
http://my.cumbria.ac.uk/Public/LISS/Documents/skillsatcumbria/ReflectiveCycleGibbs.pdf
Acknowledgements
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
https://thepsychologist.bps.org.uk/volume-21/edition-11/return-use-emotion-and-reflection
Images: B, Me
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Myeloma Treatment Tagged with: Cancer, Myeloma, Para Protein, Partial Response, Psychology, Reflection, Response Rate, Survival Rates
It happened again today. Someone said the wrong thing. They didn’t mean to. They just didn’t seem to think. In that moment, it seemed that it was important for them to say what they wanted to say, so they said it. Important to them, not me; about them, not me.
I’m sure they didn’t mean to have their words upset me. But they did. A nurse started telling me HER chemo story, uninvited. Maybe she thought I wanted to hear it, after all she went through ‘hers’ seven years ago and she’s still here; that’s something I’d want to hear, right? Wrong. I didn’t want to hear it. I very rarely want to hear others’ stories.
I didn’t want to hear it this morning when I was running later than usual and really looking forward to a much overdue call with one of my best friends, someone who always makes me feel great, even when we have talked through sad stuff or tough stuff or vented or cried together. I didn’t want to hear someone else’s story when I hadn’t asked to know. The nurse looked at me, waiting expectedly for me to ask more about it. I just wanted her to get on with taking my blood so I could get out there and make my call. She looked again. Today, I had no energy to ‘hold her off’ so I obliged. I smiled and she launched in with more detail and things I didn’t really hear, other than the ‘good luck’ at the end. Another thing I don’t always want to hear.
I couldn’t get out of there fast enough. On top of that the needle had hurt this morning; maybe because she was so focussed on offloading her story instead of taking my blood? She didn’t know how her words landed, she probably thought she was doing me a favour and on another day, maybe I would have wanted to hear her and chat away. How could she know?
Scared
I’m scared to write this blog. I think it might be taken the wrong way. Friends, family, blog readers might stop being in touch or think I’m ungrateful for all the contact, well wishes and kindness they have provided to me. Nothing could be farther from the truth. I am so grateful. I’m deeply astonished at the amazing volume, regularity and quality of support, I have received. Although, it hasn’t always been easy to receive it. I have often felt overwhelmed, sometimes smothered and obligated to respond.
There, I said it. Gosh it is hard to say in my head, let alone see it in black and white. I feel instantly guilty…and yet, honest. When I started this blog journey, I said I aimed to be real with it and share good, bad, up, down, times. I almost didn’t do that with these feelings as they feel so controversial, so risky, potentially hurtful; the last thing I want to be, ever.
I feel very vulnerable. What if you don’t understand? What if I describe how I have felt at certain times and I lose you; the very people, the very support, that has helped me get this far, that has helped me to feel loved and never alone. What do I do if after reading this, you don’t reach out again? Or don’t want to? Or think of me differently? Or want to reach out and are left not knowing if you should, or what to say?
I do hope you read to the end of this post. I do hope you understand.
Please believe me when I say I am not talking about any one person; I’m not. I’m trying to share the cumulative impact of these interactions and understand my own response to them. I’m trying to share the overall feelings, curious, conflicted, visceral and confusing reactions I have experienced, when people have been in touch, shown they care, tried to help and asked ‘How are you?’.
How are you?
Ahh, those three little words…’How are you?’. Now that I have cancer, the words, the question, feel so loaded, so complicated, with no easy answer. Being asked ‘How are you?’ isn’t helpful to me. Not right now anyway.
How on earth could you know that? It’s not your fault that you have asked me, many times, that very question; it’s a natural question to ask. You couldn’t know, that I am only now observing my reaction to the words, reflecting and working out for myself, that these three words are some of the most unhelpful to hear. Today, I was reminded that my experience and feelings about this, are not unique. Surveys show one of the things people living with cancer find unhelpful is people asking, ‘How are you?’.
Fair
One of the reasons I set up the blog, is so I didn’t have to say the same thing, give the same update, say the same answer to the question ‘How are you?’ to everyone who was kind enough to whatsapp, call, message, facebook, email. I hoped people might head to the blog, get a feel for how I was doing and leave a short comment if they wanted to. In that way, they would let me know what they thought of the blog or let me know they were thinking of me.
This wasn’t fair. It wasn’t fair on you. My hope, expectation, request doesn’t reflect human nature. Everyone has different ways they prefer to do things, different ways of communicating, connecting, showing love, showing kindness. It’s natural to do things your way. It is also fine for me to try and figure out, how, I can make that work for me too.
Please don’t…
Friends, family, strangers, clinicians, all say the ‘wrong’ thing, quite often. You don’t mean to. Most of the time I’m convinced people are well intentioned or at the very least trying to manage their discomfort in the best way they can in the moment. I also know, I have done the very same thing; been well intentioned but said something to someone or offered unsolicited advice that they may have found unhelpful, inappropriate or ignorant. When it has happened to me in the past, such as during an IVF journey, it used to make me angry. Now I’m living with Myeloma, when people say the wrong thing, anger is only one reaction amongst a range of reactions, and the whole communication situation – well, it’s weird.
Sometimes it is easy to let comments, questions and advice go. Other times, most times, communication is fraught. I want to scream; ‘not every cancer is the same’, ‘no one person’s treatment and side effects and best decisions for them are the same’, ‘No, I’m still doing chemo’, ‘ I don’t want to give you a low down on my treatment cycle in the middle of the street or maybe ever’, ‘Read my blog!’. Please don’t tell me about the person you know who has the same cancer as me and who is ‘still going after 20 years’ (I’ve been told by the people who know, clinicians and studies, that I have considerably fewer years left in my life so how is hearing that, going to help me? And my diagnosis came at stage two, was the person you are speaking about diagnosed at stage 1 or pre-stage 1, with smouldering Myeloma? How is that like me? Oh, you don’t know? Then how do you know it is even remotely relevant or interesting to me?
Please ‘don’t tell me you were speaking to a friend and their cousin has Myeloma and you can get me their number if I want’, In fact, please don’t even hint you’ve been talking about me with someone else (because that feels creepy) even though, I get this too, is a natural thing to do….and unless we are in the middle of a discussion and are talking about nutrition and supplements, or even then, please don’t suggest the next fad in ‘cancer cures’ (I’ve done my due diligence and made my choices).
Please don’t say, ‘it’s not your time’. As much as I’d like to believe it too, hearing it makes me feel very strange. On one hand, I want to agree and step into that idea, after all I have already said previously, I was sitting with the idea that my specific Cancer would become a chronic illness rather than terminal in my life time. On the other hand, I get washed with anger and want to say ‘wake up’, ‘get real’, ‘if you can’t accept it, how do you think I feel? How do you think I’ll ever accept it?’ Or ‘I’m accepting it, why can’t you?’
I just wonder what it would be like if a good friend instead said to me, ‘sh@t, x years, that’s a real nasty one, do you fancy talking through how you going to spend those years? What the years will involve treatment wise, how much time that will take up (that you know about now) and what you might want to do when you are not at hospital or having treatment? Do you want some help to work that out? and…’I know you might not know right now or have the energy to think about it but please when you can, say how I can help make the years the best they can be’. This would be helpful, I think. I won’t know until it happens. What I do know is that the conversations I have had, along these lines, with these questions, felt; useful, helpful, hopeful and realistic. Thank you.
I read this back and I fear I sound petty. Does it? The feelings are real, I can’t stop them. Like thoughts, they just show up. What do I do with them? For a short time, I felt less conflicted, less weird, when I realised my feelings are experienced by other people with cancer. Macmillan is working on a media project which will look at the social experiences of people affected by cancer and recently asked, ‘What they are tired of hearing about cancer?’ A flood of responses poured in and were so achingly honest. I was surprised at how many people felt like I did and how many also felt conflicted by their feelings. My heart poured out for them because I ‘got it’; then I remembered I was one of them. My heart pours out for me too….and then it retreats, curls up in a corner, getting ready for whatever comes next.
Grateful
I’m going to say it again, in case you have forgotten: I love that some of you are taking an interest in Myeloma and taking the time to find out more about it. I don’t expect everyone to do that. I am so grateful for the good intention when people say things or get me a number or offer advice. I am grateful for people wanting me to feel there is hope, that there are things out there that may help me feel better, wanting me to hear of others’ good fortune and hope that I experience the same. I am grateful. However, my gratitude seems to get overshadowed by other experiences; anger, irritation, desperation for quiet, peace, no demands, no messages that require an answer and these are followed by guilt, confusion, being scared. I don’t know what to ask of you, regarding communication. I know my need might change day to day and what is unhelpful in one moment, might be what I crave the next week. I’m scared to feel alone; I risk pushing you away by writing this post.
About me or about you?
Life has been so socially busy since my diagnosis, I have had to laugh. Why wasn’t I going out, meeting up, going away on breaks with friends as much before all of this happened? Why now? Is it because I want to ‘pack in time’ with the great people in my life? ‘Grab it while I can’ and in case, I become so ill that I can’t see my friends? Well yes, that’s part of it though only a small part as I’m not initiating many of the social arrangements at this stage. Do people need a fix of me? Surely not; I’m not that interesting! (I’m not fishing for a compliment here). Do they need to check and see for themselves that I really am OK right now? Do they simply want to show they are there for me? Or do they want to check in with Si, see that he is doing OK, for themselves, and because I asked them to, in the beginning, when all this crazy cancer-ness began.
Or…is the contact all about you? Is it you, the gorgeously caring soul who wants to do the right thing? Or be seen to do the right thing? Or to do, what you think you might like done, if roles were reversed, if you had cancer?. Being vulnerable again and at the risk of losing you, I am going to say that sometimes it feels demanding; “When can we next meet up?”; “Do you want to go away for the weekend?”; “Do you want to go abroad with us?”; “What can I make you?”; “Can I get you something?” Yes, I do want to go abroad, but I can’t fly right now; Yes, I do want to meet up though I have seen you twice in the last month and I need to see others too. I have smaller windows of non-hospital, non-chemo recovery time and less energy than I used to have right now. When I do have time and energy, I want to see all my good friends and family. If I see you, you my good friend, again, who do I not see, and when do I rest?
Or is it conflicting and demanding for me, because I never want to say ‘No’? In case next month, I’m not well enough to be social. I say ‘Yes’ and then get irritated that I can’t find time to rest. In an earlier post, I recommended being social while you can, as connection is good for the soul. I may need to revise this recommendation as not all socialising is helpful, inspiring or a good thing: sometimes choosing rest, quiet, alone time is important too. Also, I don’t want to miss out on experiences, so if you suggest a meet up (in the UK) to go and do something new or go somewhere new to do something fun, then I would love to say ‘Yes’. Rather than demanding, right now those suggestions seem to land differently; they feel nourishing, a chance to maximise quality of life.
What is helpful?
What is helpful communication wise? I’m not exactly sure yet. I think being in touch (please don’t stop being in touch!) but let me know how YOU are doing…rather than asking about me. I am having to focus so much on myself right now, my health, my hospital appointments, my food intake, water intake, my mental health, on an hour to hour basis, that it is so so so lovely to hear YOUR news, even a snippet, an up, a down, both or simply letting me know a ‘is what it is’ in your life, is great.
Selfishness
So…here’s another question / dilemma that has been whizzing around in my head, ‘ What level of selfishness is acceptable in a person living with cancer?’. Is it a different level for those living without cancer, major illness, other major challenge? How much selfishness is the right amount? How selfish am I allowed to be? What is my selfishness allowed to look like? Is it selfish, to want a fair amount of space, alone time, no sadness from others, people to be decisive and direct, to not have my time wasted (remember, its short and precious)?
Is it selfish to not answer messages that have questions in them, any question, and particularly ‘how are you?’ because it feels like a demand, something someone needs from me. Is this whole post selfish? Am I a selfish person? Have I always been selfish? Is selfish different from self-focussed? Is it ok for me to be self-focussed right now? What is that allowed to look like? What is acceptable? Should I care? Yes. I’d stop being me, if I stopped caring what impact I was having on others. Whizzing around……
Psychology: Ready
There are helpful psychology theories and practices that I can apply to help myself with this. I’m not ready to do that right now. Readiness is crucial in psychology. Seeking help is often a first sign of readiness, though even then, someone can still need time to become ready to explore difficult feelings or be willing to make changes in line with their goals. I haven’t sought help from myself yet. As I consider it now, briefly, two main ideas cross my mind; compassion for me – my feelings are normal and valid and, no-one can ‘make’ me feel a certain way. When I hear something unhelpful, I may react with a range of feeling and thoughts. I still have control; I can still choose what I focus on, choose my lasting reaction and choose how my day is impacted by what I hear. More about this in another post. I’m still ‘in the experience’ right now and not quite ready to seek help.
Please remember
I’m strong and I’m not.
I’m working out what is helpful and unhelpful. I don’t expect you to know. Its ok to ask.
I need space. I still need you.
I’m scared how you will feel when you read this post but I can’t control your feelings and how you choose to react; they’re your feelings, your choices.
I do hope you choose to stay in touch.
Resources that might help you to know what people with cancer find helpful and unhelpful
BBC: Things not to say to someone with cancer. A great little video. http://bbc.in/2kK4Wst
Acknowledgements:
Si, A, S and J who encourage me to be me every step of the way.
Image (sleeping me): B
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer Tagged with: Cancer, communication, grateful, helpful, Myeloma, Psychology, ready, say, scared, unhelpful
It’s been hard to write the blog in week’s four, five and six of Chemo; I didn’t know where to start, there didn’t seem to be time, and I was worrying. Even Music didn’t show up much; I didn’t hear it or go looking for it – strange.
I started to worry about having little time; not time on this earth but time during the day to do all the things I needed to do. Sound familiar? I have learned over the years that when I worry about not having enough time, it usually means I am probably trying to do too much and am not getting enough rest or chill space. I noticed too that when reminders popped up in my calendar to get some ‘headspace’ or do a visualisation, I was swiping them away and thinking I’ll do that later yet later never came. This worried me.
I wondered whether my blood test results for week four would not be as good as the previous weeks and imply that going away to Canada had been a bad call after all. It turned out this worry, while natural, was unfounded; my results showed more test results falling within the normal range than in the previous weeks and suggested my immune system was hanging in there – a good result.
I worried about an interaction with a Nurse and found myself feeling ‘told off’, then wondering if I was being over sensitive, or not sensitive enough to others. I felt guilty for coping well with and doing well on Chemo. The nurse had asked how I was doing and I had said something along the lines of “really well thanks” and “chemo had been quick today”. I heard a response of “well that’s not the case for everyone”.
Then a stream of thoughts flooded my mind;
- Sh*t, had I spoken too loudly?
- A lot of people look very ill and drained on the Chemo ward today, have I not thought of them? Should I think of them?
- I have answered honestly and positively; that’s what I committed to do throughout this process wherever possible.
Feeling a bit indignant, more thoughts rushed in;
- No, it’s fine for me to be positive after all it’s not my fault I’m doing well,
- Being positive is meant to help with healing so I’m not going to stop answering ‘I’m Doing Well’, when I am doing well.
Overnight and with reflection I decided I probably was being a bit sensitive and it was also fine to be positive. The following day I checked in with the nurse, who quickly reassured me that he had not thought I’d been insensitive to others on the ward at all. We cleared any misunderstanding and he reiterated how great it was that I was doing well. This frank discussion helped bring clarity and perspective to my thoughts. It stopped this worry completely. I’m glad I raised it with the nurse even though I was uncertain (and nervous) about what I might hear.
Despite this resolution, a residual sense of stress, worry and an over active adrenal system remained; the opposite of the many calm moments that I had been experiencing last month. The overall worrying continued.
My weight had dropped again to 66kg and I was struggling to eat enough calories. I often didn’t feel hungry but still tried to eat. I hoped my weight would stabilise and even climb back up to 68kg. That weight had felt comfortable while now I noticed I didn’t seem to have much padding, wondered if I really did have much of a reserve if I got an infection and I noticed I had lost muscle mass. The backs of my hands look like some very elderly person’s hands; dry and wrinkly despite the constant fluid intake. I worried that my weight would keep falling and my skin would get worse.
I worried about whether I should stick to the plan of not working for six months to focus on getting to remission as successfully as possible or to work while I still could. I worried about if I worked, would it be too stressful, leave me enough time to rest or feel like it’s getting in the way. I worried about not being able to work out how much work was too much, and for private practice whether enough work matched with breaking even financially. I worried about how to contain my clients’ concerns if my appearance changed with more chemo and how I provide a consistency of safe space for them if my medical appointments needed to change in the future. I worried and yet I missed making a difference and being the psychologist I know I can be.
To cap off the week, I finally had a long-awaited Ear, Nose and Throat appointment (yet another hospital visit) to check my possible hearing loss. This is something else I have been worried about for a long time and that has no doubt been bugging Si for years as I constantly ask him to repeat himself or need the TV volume well above the level he would choose. I had noticed my hearing was worse when; I’d find it difficult in crowded places (and with background noise) to hear the person I was standing next to and speaking with, or to hear what someone was saying if I couldn’t see their face and mouth. I noticed I had started guessing (not always accurately) what someone was saying.
For a psychologist; listening skills are imperative and before listening skills can be invoked one has to be able to hear! While I had rarely experienced these problems in one to one therapy sessions, I was concerned symptoms would get worse or impact my functioning. Sure enough I wasn’t dreaming this either; tests showed my hearing has deteriorated though is still in the mild loss range; inner ear cochlear deterioration so unrecoverable. This is essentially the kind of loss most people start experiencing from around 60 years old on…except I’m not 50 yet! I suspect I’m paying the price for good times; a burst ear drum while scuba diving as a teenager and damage from standing far too close to speakers at Fabric nightclub a few years back (ok, so quite a few years ago now).
So I’ve been worrying and it’s completely natural to worry. It is not helpful to dwell in worry or worry about things I can’t control so how do I let go of it? Worry is something I have helped many clients with over the last ten years so it is definitely time for some self-help. Below are the psychology tips and strategies I reminded myself to use.
Psychology – Overcoming and managing worry
What is Worry? How worry works.
Worry is a form of mental problem solving about potentially negative future events. It can be triggered by a variety of external events or from thoughts that just pop into your head. Worry is characterised by a lot of ‘what if’ questions. For example, ‘What if my Chemo doesn’t work?’ ‘What if my new boss doesn’t like me or think I’m good enough?’
Normal worry is usually short lived and leads to positive problem solving activities. Worry becomes unhelpful when it is about several things, is frequent and difficult to control or dismiss. We can think prolonged or frequent worry helps with problem solving, planning and preparation however worry breeds more worry (and anxiety) which prevents positive thinking and action.
Worrying can rob people of time. It’s exhausting and often leaves people feeling tense, with disturbed sleep, difficulties concentrating, and feeling irritable. While sometimes it can feel appropriate or necessary, worrying is exactly the opposite; it’s restrictive, and takes up time, attention and energy that could be spent on useful, enjoyable and meaningful activities.
Why do some people seem to worry more than others?
Worrying is human! The causes of are not clearly understood though it may be that a number of vulnerabilities increase the chance of developing a tendency to worry excessively; prolonged stress, past experiences of uncontrollable or traumatic events, an inherited biological disposition to experience negative emotions, learned messages from others that the world is unsafe or that worry is useful, and a coping style that involves avoiding challenges or situations where there is a chance of experiencing negative emotions (which prevents positive experience of coping and positive emotions).
Managing worry.
UNDERSTAND YOUR WORRY CYCLES – Understand your vicious cycles of anxiety and how avoidance contributes to anxiety. See the handout below (CCI – Vicious Cycle of Anxiety).
NOTICE YOUR PAYOFFS AND COSTS. Part of understanding your worry can be to notice if you are getting a pay-off from worrying, ‘buying into it’ and most importantly what the cost of the pay-off might be. Are you avoiding going out? You might get a pay-off of avoiding any negative emotions such as uncertainty of what will happen or be said when you see someone but you also miss out on the potential positive experiences; fun, laughter, connectedness or ease which going out may also provide. Also notice, where do you worry and what are you doing when you worry. For example, are you sitting down and telling yourself ‘you are worrying but getting rest at the same time’. Consider that your type of ‘sitting down’ in this instance is not truly restful and what it actually costs you is feeling rested. If you shifted your attention away from worry to giving yourself permission for genuine rest, and allowed yourself to do something enjoyable without the worrying in that same time, you are much more likely to feel rested and relaxed (and be better able to cope with normal levels of worry that we all experience).
Other practical strategies:
USE A WORRY TREE to identify where to put your attention so that you shift your attention to worries you can do something about and form a plan for rather than worries you have no control over. There is a link to a handout below
CHANGE “WHAT IF’ STATEMENTS TO ‘HOW’ STATEMENTS’. For example, instead of “what if Chemo doesn’t work?’ I might ask myself ‘How will I act if Chemo doesn’t work? How will I find out what action can be taken next?’
POSTPONE WORRY. This is where you give yourself permission to worry about a specific topic, at a particularly time later in the day, for a maximum duration of say 20 minutes). This way you are acknowledging your concern and allowing yourself to think about it for a contained amount of time without it taking over and impacting the rest of your day. Sometimes you may find the thing you were worrying about has resolved itself by the time the allotted worrying time has come around, or it looks completely different and isn’t as big of an issue as it seemed earlier or doesn’t have to be dealt with today after all.
Summary
These are just some tips for managing worry and there are others if these don’t work for you. Remember, while worry is normal, excessive worry can be gripping and creep up on anyone. Even when worry can feel like a good thing to do, it creates more anxiety. When it stops you from enjoying life or doing the things you want to do, worry is not your friend. Excessive worry can be overcome. Please try the strategies outlined above and the links to helpful handouts below. If you find them hard to do alone, do talk with your GP or ask a psychologist to help with gaining treatment or to work through the strategies with you.
Acknowledgements, Permissions and Helpful Handouts:
Centre for Clinical Interventions (CCI), Department of Health, Australia http://www.cci.health.wa.gov.au/
CCI Generalised Anxiety and Worry
http://www.cci.health.wa.gov.au/resources/infopax_doc.cfm?Mini_ID=46
CCI Vicious Cycle of Anxiety
http://www.cci.health.wa.gov.au/resources/docs/Info-Vicious%20Cycle%20of%20Anxiety.pdf
CCI Postponing Worry
http://www.cci.health.wa.gov.au/docs/ACF3D66.pdf
Get Self Help Get.gg – Worry Tree
https://www.getselfhelp.co.uk/docs/worrytree.pdf
Images: Simon Hayward
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Cancer, Chemotherapy, Myeloma, Psychology, Worry
April 2nd, 2017 by Janine
Music: Jump Around by House of Pain, Got Moves Like Jagger by Maroon 5, Funky Town Gangsta’s Paradise by Coolio, Gin and Juice by Snoop Dogg, Whatta Man by Salt’N’ Pepa (1994!!!). Many many great tracks from the past, particularly hip hop played at the end of the ski/sightseeing day, on the way down in the gondola, via JWL’s phone and with her knowing all the lyrics – seriously impressive or an affliction as she calls it!
Medical Update:
No Chemo, No Hospital this week – yee ha!
Infection: No
Temp: Normal
Mental Health – Nourished by great friends, awesome views, fresh mountain air and being away on a holiday with my hubby (our first, over 5 day, non-New Zealand holiday since 2009, much needed).
WARNING:
I do not advocate travelling abroad during induction chemo treatment. A body’s immune system is weakened during chemo and there is a higher risk of infection. However, in my case, there were extenuating circumstances so a trip to Canada was my idea of the perfect accompaniment to my treatment plan!
Missing Out or A Dream Realised?
Standing on top of a mountain at Banff and Lake Louise had been a dream of mine for many, many years. I had the good fortune to go to Vancouver, Whistler and Blackcomb in 2003 and absolutely loved the experience; the only thing missing at the time was my new lover Mr H, who I had left behind in London. So, as soon as was possible, we planned another trip.
In 2009, a great bunch of old and new friends gathered from all over the world in Meribel, France for a week of skiing. We had a blast. We’d always talked about doing a repeat; State side or in Canada. I had planned it once before in 2012/13 and then cancelled. It was an awful time; I felt like I had really let friends down. We were almost ready to book and then for responsible financial reasons we pulled the plug.
That was not going to happen again. So, we waited until we had the funds, then contacted S & J to see if they were keen on joining us in Banff and Lake Louise. They said yes. We set a date. Easy. We put out the ‘all points invitation’ to the 09 ski bunnies and P & G took the bait – they were in! Fabulous! Regretful “can’t come this time” messages flowed from the rest of the peeps; we quickly knew the score. 6 of us, perfect. We booked. We started getting excited. This was my big post doctorate reward. Sure, it was expensive but it was worth it. I even booked premier economy flights on the return for a bit more comfort for our weary post ski bodies. I couldn’t wait.
Then Myeloma struck. Would I have to cancel again? I yelled in my head “I WILL NOT let everyone down again. That is just not me; that’s not how I roll”. Then more quietly to myself, “Ok so let’s get real, girl; you may have to”. One consultant was silent when I explained about our trip of a lifetime and asked, “was there any way we could make treatment work around it please?” I promised not to ski. I stated, “it would be such good mental health” and “It would give me time to catch up and process everything that’s happened since January”. The other consultant was “yes, we can work with that” and pointed out my trip was timed for the non-chemo week of cycle one; “just be back to start cycle two on the 3rd April”. YAY!
THANK YOU, Universe.
Precautions
The main mission was to make sure I didn’t get any colds or infections right before or while I was away. Dr L wrote me a fantastic letter for obtaining travel insurance which pointed out that I currently did not have any complications and wasn’t go to die on anyone in the next 12 months (take note British Airways and Canada Customs). By the way my extenuating circumstances are that I’m young, fit and healthy with no kidney or otherwise damage despite having Myeloma. If the opposite was true, I think travel abroad would have been foolhardy, and unfair to the clinical team trying to help me get better.
Made It!
After eight hours of wearing double masks (my ears were a bit sore by the end of the flight) and tight leg compressors to prevent deep vein thrombosis, being grilled by Canadian customs who reacted to my mask, and three times interwove asking me when we were leaving into the conversation (presumably to check I wasn’t coming in to their country to seek treatment), I made it to Canada with Simon.
Being on top of the world, breathing in the air, the views, the company– it was like nothing else. I even coped with not skiing though it looked amazing; good base, snow overnight most nights, gorgeous sunny and high sky days and the slopes were not busy at all compared to European pistes! Oh well, next time. Bring on remission.
“Caribou, Caribou” was the cry from J. “Look out of your window!”. Si and I raced to our balcony and watched four Caribou saunter down Fox street before turning into Cougar Street. (I love the street names in Banff; Muskrat St, Bear St, Squirrel St, Antelope Lane, Lynx St, Wolf St..). The guys grabbed cameras and went to capture the perfect pic.
They were a beautiful sight and one that couldn’t have been organised better by a Banff tourist board. We discovered later that they were not Caribou at all, but Elk! (Hence the title for this post). They did not seem phased by human beings being on their patch. Fabulous to see. We wondered what other sights we could rack up while being here and hoped for Moose, Wolf and Bear!
The six of us piled into HMS Sasquatch (our nickname for the monster of a vehicle we hired) and headed up to the slopes, went sightseeing to Lake Louise and Two Jack Lake, and took on liquid refreshment at the fabulous Fairmont and Post Hotels. It was like living in a fairy tale or Narnia, snow covered trees, beautiful light, photo opportunities in every direction.
P (obsessed with bears) gave us the report. Apparently just up the road, grizzly number 122 (aka the Boss) had woken from hibernation early. Given last year he munched his way through two other bears and a sheep on waking – I decided to stay well away from him! P on the other hand seemed keen to race to the last known sighting spot!
Tears and Mindful Thoughts
Tears one morning. They’re close to the surface and hit me when I’m least expecting them. They tend to come when someone says something lovely or is particularly kind. This day was a bit different; “I don’t want to die” flashed up, very quickly and passed, but it was there. It was a bit of a shock though gone in a moment. A thought passing through. Like all other thoughts. Coming and going. To be observed. A thought not worthy of attention, of being ‘bought into’, unless it was a thought that served me. I let this thought go. I took a deep breath. Mindful. Grateful.
No Regrets
Everywhere we went in Canada we were met with friendly, helpful people who adore being in the mountains (including a lot of Kiwis and Aussies, many of whom were on their second season). The service was great. Every café had gluten free menus and were more than willing to help meet diet needs.
My decision to travel felt reinforced and validated at every step and no more so than when sitting in the outdoor hot pool at Banff’s Fairmont Palliser spa looking at mountains in all directions, drinking in the fresh air and being pampered to the hilt. I am so glad I went and didn’t do what I would have done in the past; think “I had better ‘be good’, ‘do the right thing’ and if the standard medical guidance is not to go abroad, then ‘I shouldn’t go abroad’.
Knowing I may have a short and finite time on this earth helps with decision making and helps discard some old ways of being and thinking. It has made me check in with whether I am spending my days in the way I wish to spend them and notice who gets to have a say in that. Going to Canada was one of the best decisions I have ever made for my own mental health; taking all the precautions possible to keep myself well, while away, was the necessary and balancing price to pay for that decision. No regrets.
Psychology
Mental health and mental strength comes in many different forms. Yes, it can be about being stoic, practical and positive in times of crisis. It can also be about taking time to examine what it is we need, in and of this moment, and to consider honestly, what is stopping us from having that need met; a fear, a lack of voice, a habit in the way we think or have always behaved, in similar situations?
It doesn’t matter what we have thought or done in the past; we can always choose to think and behave differently now. Isn’t that what learning life’s lessons is all about? Learn, then do something differently and therefore experience a different result.
Cognitive Behavioural Therapy (CBT) examines links between and cycles of; thoughts, feelings, behaviours and physical sensations. It helps us understand whether the cycles are helpful and serve us well or are unhelpful and no longer serve us, our values, healthy function or goals. CBT strategies such as challenging our thoughts in a constructive, non-judgemental way, help to weaken and break the links between unhelpful thoughts and behaviours. Ultimately this leaves space to create supportive, useful links between thoughts and behaviours. These usually result in more manageable or desirable feelings and better physical sensations.
In this case, I looked at the links between my thoughts about ‘doing the right thing’, how that made me feel (constrained, resentful, mixed with good), my resulting behaviour (to do something I didn’t really want to do or forgo something I had planned for myself i.e. not travel) and the physical sensations (tense). I gently challenged this cycle and the assumptions that underpinned it such as ‘there is only one way’ and ‘you must always go with the first option medical teams advise’.
I thought about what I needed (to go to Canada as planned), weighed up the risks (my otherwise good health with the risk of getting an infection) and I decided I could manage and minimise the likelihood of getting an infection by; caring for myself well, not letting myself get cold, taking all precautions such as double masks when on the plane and in public areas, and not skiing.
I then chose to think and behave differently from the constraints I have applied in the past. While I would normally do things by the book when others in authoritative positions are involved, I decided, this time, that I knew what was best for me, negotiated it with the medical team and reaped the benefits. If I had cancelled and stayed home, I know I would felt disappointment, anger, resentment, bitterness at the Myeloma and sorry for myself.
This way I didn’t experience any of those unwanted, negative feelings.
Instead, I felt intense happiness, empowered and ALIVE, ON TOP OF A MOUNTAIN!
Acknowledgements:
Images and Content: The Fun and Fabulous Ski Bunny Travel Companions; S & J, P & G, & Si.
Illustration (Grizzly): Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer Tagged with: Cancer, CBT, Chemotherapy, Cognitive Behavioural Therapy, Mental Health, Myeloma, Psychology, Travel
March 23rd, 2017 by Janine
Music: Fat Boy Slim – Where You Iz (Where you is, is where it’s at, and you can’t beat that with a baseball bat); Far L’amore (awesome dance track from the film The Great Beauty), VCMG Spock.
Medical Update:
Full dose Chemo plus new drug by intravenous Zometa (bone builder)
Follow up e-Coli urine test – all clear
Ferritin (iron) levels improved from slight anaemic to within normal range
| Test |
High/Low/Normal |
Right Direction? |
| Total Protein |
79 N |
YES! |
| Albumin |
35 N |
|
| Kappa Light Chain |
|
|
| Lamba Light Chain |
|
|
| Urea |
5.7 N |
|
| Calcium |
2.20 N |
|
| White Cells |
2.59 L |
No, as expected (AE) |
| Haemoglobin (Hb.) |
111 L |
No, AE |
| Platelets |
243 N |
|
| Neutrophils |
1.11 L |
See-sawing AE |
Pin Cushion
Day one this week went pretty smoothly. S came and kept me company and we talked about her trip to Norway over the weekend. By 5pm I was very tired and my back around my weak T7 area (mid back) was sore though not hugely so. My slightly swollen ankles, dry eyes with eyelids sticking to the eyeballs didn’t phase me; eye drops and putting my feet up for a while helped with those. The coconut water added to my water bottles during and post chemo also seemed to prevent the headaches of last week. So, all good.
Day two was a slightly different prospect and once again I needed to find my voice. I’d been awake at 1am, 2.30am, and 3am before eventually getting up at 4.10am. The lack of sleep and waking up soaked through probably reduced my patience and tolerance level for the whole day. The rest of the day had started well; raced up for early blood test at 7.30, raced to get the lovely K to work his magic on my hair (why not have perfect hair for the last day of chemo on your first cycle!) and managed to get back on time for noon and my chemo appointment. Then the fun and games began.
A nurse I hadn’t worked with before tried to put in the cannula. She had trouble finding a vein and I know that can happen as Chemo goes on though I was somewhat sceptical at this stage. My arm and hands were warm so cold wasn’t the culprit. I thought about asking Nurse L to come and do it but thought I should give this new Nurse a go. She was sweet yet apologetic for everything and seemed slightly clumsy. A bad day? After two goes of pushing a needle into me only for it to be a bit painful and no vein was found, I asked if Nurse L could do it. To her credit the first Nurse apologised again and explained it was policy for exactly that to happen, that after two attempts to insert a cannula a different Nurse is asked to try. Interesting, that had not happened last week with another Nurse, G, who had rooted around until he found a vein on the third attempt. I would not let that happen again.
Nurse L came over and using the back of my arm got the cannula in first time, pain free. Got to love that woman. Next, when the original Nurse came to change one of the intravenous bags over, the cannula-to-bag connection broke (this had never happened before). Once again to her credit she apologised and explained saying the line may still have worked but to be safe she had replaced the whole line (fortunately the cannula could stay in place). I made a note to ask for Nurse L, Amy or M next time.
Blood
How often do you look at your poo or the paper you wipe your bum with? Who has time? Well I seem to be doing this a bit more, fortunately or unfortunately depending on your point of view. This week at about 5pm on day two, I spotted blood, quite a lot of bright blood on the paper and then in my stool. This concerned me, I so didn’t want to have an infection that would stop me doing this trip of a lifetime to Canada. I decided to see if it stuck around or went away. My temperature was fine so I didn’t panic immediately.
Evening snooze and Steroids were working their magic so I was still awake most of the night and eventually went to bed at 4.30am. Got up at 8am. Temperature was still fine but blood was still there. Felt cold and shivery flu like muscle ache symptoms but I’d been warned this might happen thanks to the Zometa so no panic there and felt better by 10am. Finally called the on-call Haematology Registrar at Kings and they suggested a watch and wait approach too so all fine. The blood had stoped after another day.
That may be because my body had bigger fish to fry; like killing cancer and hey maybe some nasty cancer cells went out with the blood. Now that was a nice thought. Ha, here you go nasties – ejected from Janine’s body forthwith, never to return, thank you! Die. Die. Die. I started singing my little ditty; “I’m killing cancer cells and saying sorry to the good cells that have to go with them”. It always cheers me up though I’m getting sick of the Nashville twang version. Might try rapping it next.
Extra supplies and tips for travel
Because my immunity is lower than usual I had been emailing and speaking to Dr L about how to look after myself while travelling and away. He sorted a prescription with some back up alternative antibiotics in case I got an infection and suggested I got loperamide in case of diarrhoea, paracetamol and also plasters to cover any small wounds. Sorted.
We also talked about masks. He explained that wearing a mask was very considerate of me regarding others though wouldn’t help me much. When someone sneezes or coughs and shares germs, it’s the tiny molecules at the end of the spray that get everyone and they are small enough to pass through a mask. I said I’d double up the masks. Dr L laughed and said “I’d rather you could breath!”. He did make some suggestions about how to adjust the aircon on the plane if I did find myself unable to move away from a germy splutterer which were helpful. He insisted the main thing was that I didn’t get cold, or pick up a cold or virus and he emphasised that I would be more vulnerable to this happening as the Chemo worked its way around my immune system. I tried to reassure him that I would take every precaution possible.
We said goodbye to S. It was time. Her hubby was missing her badly and his birthday was imminent. It was so good to have her here and she helped make the first month of Chemo bearable. Thank you Universe for aligning her visit with my need for extra special bestie help and support. Thank you S for making the longer stay happen. D, thanks for sharing her!
Psychology – Asking for Help
Asking for help is a strength. It is not a weakness. Asking for help does not mean you are weak or needy or less than; it means you are human. People need help to achieve big goals in life. The tennis player doesn’t reach his local team champs or the final of Wimbledon without the support of the person who had taught him/her to play tennis in the first place or the person who continues to help him/her play week in and week out, now; a coach, a tennis racquet stringer, an opponent. Many, many people help contribute to one person’s goals in life.
When you have a difficulty, big or small, asking for help is a powerful message and gift for others as well as for yourself. It lets people know they can contribute to you and that it is also OK for them to ask for help when they need it. You will not burden them; you can ask for help in a very specific way, with clarity about what you need and in a way that leaves them informed and free to choose. If they experience a feeling of burden, that is not your concern, it is their experience, and one they would need to manage by finding their boundaries and voicing them (in the same way you could if you had said yes to helping someone).
If you are open and honest with the people you are asking for help from, and clear about how you would like them to help, then it is up to them to manage themselves if they say yes to helping. So ask for help, especially if you are going through a complex health challenge like Cancer. You can ask friends, neighbours, family, medical professionals, your GP; ask to be referred to a psychologist, nutritionist, physiotherapist if you feel that would help you meet a need.
I have asked a friend to stay longer, to carry my urine, to research nutrition. I have asked my husband to help me to speak to my parents about the best time for them to visit and asked him to help me stick to who I want to be through this stage of the Cancer process. I have asked my consultant to answer seven questions at the beginning of each week of Chemo. I have asked the MacmIllan team for help getting referrals to learn about financial entitlements, access to massage and for a place to sleep between tests. I have asked friends to leave any sadness at the door. I have asked neighbours for referrals to a nutrition therapist and to take in parcels of books and food. I have asked my consultant for a referral to a psychologist and a dietician. I have asked friends to meet, to not meet, to forgive me if I’m not quick to respond to emails.
I HAVE ASKED FOR HELP. HELP has been forthcoming from every angle. People often want to help and you can make it easy for them by letting them know what help you need. My asking has not been met with annoyance or judgement but with thanks and love. If you ask people to help in ways that you know play to their strengths then you make it even easier for people to help you though don’t let that stop you either, just ask. If they can’t help or don’t know how to help in the way you are requesting, it is up to them to say No or suggest an alternative way of helping that may meet your need and match what they can offer.
The right people around you, at the right time, with the right help for you and your needs, can be a significant and positive part of the healing process, so why should you miss out on that?
Acknowledgements
Images: Stephanie Kemp and Nurse L
Posted in Chemotherapy for Myeloma, Psychology for Cancer, Symptoms and Side Effects Tagged with: Asking for help, Cancer, Cannula, Chemotherapy, Myeloma, Psychology, Zometa
March 17th, 2017 by Janine
Music: Where is the love (Black eyed peas), Beautiful (Christine Aguilera) Living On a prayer Bon Jovi, Me – I’m killing killing cancer, sorry good cells
Medical Update:
Full dose Chemo started (only half last week)
Glucose test: ‘Brilliant’ according to Dr L; normal=awesome pancreas
Dr L’s comment ‘I’m very happy’ with the way things are going
Blood summary (for normal levels see Chemo Wk 1 post):
| Test |
High/Low/Normal |
Right direction? |
| Total Protein |
93 H |
Same |
| Albumin |
36 N |
Yes, up from Low |
| Kappa light chain |
15.02 N |
Yes |
| Lamba light chain |
4.7 L |
|
| Urea |
5.4 N |
|
| Calcium |
2.21 N |
|
| White Cells |
3.48 L |
No, as expected (AE) |
| Haemoglobin (Hb.) |
118 N |
|
| Platelets |
221 |
|
| Neutrophils |
11.31 H |
|
Rollercoaster
I thought I had it handled: the meds, the new schedule of hospital appointments, new food regime, my admin. I’d written everything down: what to take, when; how to take it (with or without food, with or without gloves, morning, midday, night, once, twice or more times a day), listed things to get done, was recording my temperature twice daily and all experienced symptoms. I thought I was keeping on top of it all. I was feeling clever and calm. I was. Then I wasn’t. I felt angry and then a little stupid. I had missed a key drug.
It was Tuesday morning, I was waiting for my cannula to be inserted. A light bulb moment and then a wee bit of panic; I realised I had not taken cyclophosphamide yesterday. Why didn’t the nurse tell me to take it? Was I meant to take it as soon as my consultant gave the go ahead for Chemo? Yes I think I was, yet the instructions were to bring the drug up to hospital so I had expected the clinical team or nurse to tell me when to take it. Oh what a f**k up. I explained what had happened to the Nurse and she said there is no mention of Cyclophosphamide on her medication chart. Later she mentions there is usually a check box for that kind of thing. How much of a calamity was this? It’s a strict clinical trial protocol isn’t it? What happens If I don’t take the right med on the right day?
Nurse M had given me a table chart mapping out which med needed to be taken each day though it doesn’t account for daily frequency nor all of the supplements I’m having to take as well so I had written out a Janine version. Ha! Obviously I’m not quite as on top of everything after all. I spent the end of Chemo day 4 waiting for my consultant to advise the nurses what happens to me now and if and when I should take Cyclo. Dr L comes by about 4pm: “don’t panic, it’s fine, of all the meds to miss, this one was probably best”. He is such a sweetie and seems to say all the right things.
My heart rate (up to 90 bpm) began to return to normal. Dr L suggested I don’t take Cyclo straight away: “it’ll keep you up all night, take it in the morning if you don’t have an infection, fever or high temperature”. Phew. Not a complete disaster then. We talked about the email he’ll send, about it being ok for me to travel (hmmm, hoped he still trusted me to take the meds on time while I’m away) and he checks again that I WILL be back for the start of cycle two. I reassured him I would be.
I felt awesome on Wednesday; the sun was out drenching the garden, I felt pain free and full of energy. I thought; “This is good! I even feel a bit high”. I wondered what was causing the euphoria. Drugs, no doubt. Relief, probably.
A superb short piece of consulting work through a team I wanted to work with had been offered but the start date was yet to be confirmed. Wednesday ended up being a bonus day as I had thought I would be working. It was a cracker of a day. I sat in the garden with S, ate well, relaxed and revelled in not having to race off to a hospital appointment or have saline, glucose and meds shoved into my arm. However, the next door neighbour’s kitten, T, was driving me bonkers.
Psychology – Behavioural Training
I’m chilled out in the sun then out of the corner of my eye, on the garden wall, a flash of white and then another and then a flash of black and white; two paws and a head. A Kilroy moment. Here comes T. He must be dangling down on the other side of the wall, its so cute and funny. I sigh and laugh simultaneously knowing what is coming. I am trying to complete behavioural training with T as he and our cat, Mason, get on well and race around each others’ gardens but T is like a V8 4WD diesel vehicle (a right guzzler); he’s all paws and stomach, bounding around and eating everything in sight.
We like to leave our back door open when we are around. I was trying to enjoy the sun yet train T to stay in the garden and not go into the house (with our neighbour’s permission). The key to any behavioural training is consistency so I told myself I won’t have to do this forever and he’ll get it eventually. I took a deep breath and for the next two hours felt like a yoyo or space ball; up down, up down, up, in out, in out, chase, hiss, “back away from the cat food T”…eventually, though mostly when I WAS looking, he lay down outside, a foot from the door, making a pathetic though cute meowing sound. It could have been a request for Mase to go out to play though frankly, I suspect it was a master manipulator tugging heart strings saying “come on, you love me really, you don’t really mind if I eat you out of house and home”.
Metaphor for Crisis
The up and down with T seemed to be the metaphor for my rollercoaster week. Next thing I know its 3am, I’m awake with an awful thought. It’s always been in my head that we are flying back on the 2nd but I had better check. Sh*t, sh*t and triple sh*t. Yes we fly on the 2nd but we don’t get back in to London until the midday on the 3rd. This can not be happening. The 3rd is a Chemo day and midday does not allow enough time to get blood tests done, consultant review, pharmacy to make up the drug and to get the chemo done. Now what? I scramble around trying to see if the flight can be changed and sure enough it can – if you have a cool £6000. No I don’t think so. I check the site again; hold on, they are still showing as having economy flights back from Calgary as available, albeit for the full price around £900-1000 (a whole flight price again on top of what we have already paid). While not pleasant, it was an option. Si woke and asked me what was going on. I told him and he said “leave it to me”.
Si rang me later saying they can get us back on the 31st for a change fee. I said I can stomach losing one day of our holiday but two is too much; there must be another way and why can’t we get the flight that is showing on the website. Eventually Si gets it sorted and we fly back a day earlier, arriving in time for Chemo the next day. We pay an extra £300 plus for the change instead of £1000 thank goodness though it is for the privilege of flying back economy instead of the premier economy seats we had pre-paid for. I have my first “this is unfair” melt down. Though with the crisis averted I start feeling normal again. I had not been looking forward to saying to Dr L that I’d stuffed up again.
I’d been chatting away to Dr L by email in the evenings and early hours about various little things that needed sorting (who’d of thought an NHS service would include this?) and he pointed out the importance of getting more sleep. Apparently afternoon naps have been proven to “prolong survival”. With the week’s crises thus far overcome, I finally fell into a deep sleep on the couch in front of a random programme, Forensic Detectives (which I secretly like for watching as you don’t have to concentrate; everything is repeated multiple times and it often sends me to sleep).
I wake up with my clever clear and calm possibility renewed and the thought “I have done 4/6 days of Chemo for this month already”. I also wonder if Chemo is tanning me as my bright red cheeks and chest of the morning now looks tanned. Strange, made note to self to ask Dr L about it.
In the mean time, the work start date was still to be confirmed so it looked like Thursday may be free too. Life didn’t wait just because I have cancer or because I was trying to deal with loads of new information and activities; the house insurance renewal turned up, washing still needed doing, bedsheets needed changing…No further crises thankfully.
P.s. S nicknamed my intravenous drip holder C3PO so I gave him some headwear for his trips to the loo…and it kept my scarf clean while in the loo!
Acknowledgements
Images: Stephanie Kemp and with Nurse Amy’s and T’s parent’s permission
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Behavioural Training, Cancer, Chemotherapy, Crises and Stress, Cyclophosphamide, Missed Medication, Myeloma, Psychology