Peripheral neuropathy. A fancy pants way of saying pins and needles. Except it is a bit more than that and the more, is scary. When tingling on the soles of my feet and in my hands turned to prickles and cried out for attention, I had just started my 14th cycle of chemo. At night, as if hedgehogs at a rave, the prickles began dancing around, keeping me awake. My self congratulation for having coped well so far and immense gratitude to my body now seemed a little premature or at least to have jinxed me. A strange oscillation between numbness and pain set in. At first, it came and went so I wasn’t too worried. I kept up the once a week, Maintenance Chemo.
The pain got worse. The tingling turned to a sharp micro needle feeling and the ache crawled up my left arm. I remember thinking, this isn’t good. I started talking to hubby about wondering whether the benefits of chemo still outweighed the side effects. We decided they did. I kept going.
So, did the sensation and the pain. The cannula insertion became excruciating. The drip of the drug into my forearm was ok but by the end of the treatment the whole arm throbbed; I hadn’t had that before. In the days in between chemo, the pain, numbness and needling rollercoaster, deepened and didn’t let up. I felt increasingly fatigued, distracted and unable to concentrate. Pain will do that. The symptoms eased a little if I did nothing and stopped using my hands altogether. Have you tried that? It is nigh on impossible! My weekends became slow, sedentary, dull; low mood came a calling.
Peripheral neuropathy doesn’t like hands
Then it hit me; the way I hold a pen had changed. The length of time I could hold a hairdryer and the way I used a hair brush had changed. Whenever a cap needed to come off a bottle, I now ask for help. I was using two hands to open doors or press flush buttons on toilets. Cooking had virtually stopped (and I had thought I was being lazy) instead lifting chopping boards, holding pans, taking roasting dishes out of the oven were difficult. I no longer enjoyed being in the kitchen. No wonder I’d started avoiding it. Hubby rattled off a list of other things I’d stopped doing or was doing differently.
I felt exhausted just thinking about it. Should I stop treatment? Should I keep going? Would I lose the use of my hands if I continued with chemo? What would life be like if I couldn’t use my hands? If the pain was too much? Was I being a wimp? I’m on a clinical trial, I signed the forms, I committed to it; could I simply stop? What would happen to me if I did stop? Would my cancer flare? Was chemo worth it? Was chemo making things worse? How do I decide whether to continue something that may extend my life, when it seems to be significantly reducing, the quality of the life, I have left? My brain; the whizzing and often unhelpful thought production machine, joined the rave.
I told my oncologists what we had noticed about the difficulty using my hands and how I was questioning whether to stay on the trial; questioning whether more chemo was the best thing for me. They ran a few tests and determined I had lost strength in my hands, especially my left hand. They recommended I defer chemo for a week.
That week came and went with no improvement. I went into a holding pattern for another week. Peripheral neuropathy is the pits and as well as dancing needles it feels like being burnt, a searing. The pain was constant, in my shoulder, my forearm and using my hands made everything worse. More MRIs were ordered. I started to worry about new lesions. Was it peripheral neuropathy? Would it get worse? Was it something else?
Deal or no deal
It came down to one week and the limit of missed weeks allowed when on the trial. I had happily missed a few weeks of treatment to be with Mum during part of her radiotherapy and then missed additional weeks while we waited to see if the pain and hand function would improve. We now had to decide, the medical team, hubby and I, the best next step for the one remaining week; chemo or no chemo. Sounds like deal or no deal except there was no money involved, no windfall or good luck, instead hope or no hope. Bones versus hands.
Hands won. Living rather than life, won. This time. Drs L and A recommended I stop chemo; they didn’t want my hands to get worse and so I was kicked off the trial.
After 21 months, 17 cycles of chemo, virtually weekly blood withdrawal, 100 odd cannula insertions…it was time to give the body a break.
Care as Usual
I went off the trial and on to ‘care as usual’. What I didn’t factor in, was that meant I would no longer be looked after by the trial team, the team that had had my back from the beginning, the team I had come to know, feel safe with, could express my fears and questions to and laugh with. I would be losing the team that had been with me since March 2017 when I first stepped into the Chemo Day Unit and steeled myself for the uncertainty of cancer treatment. Sigh.
Then of course there were the dominos. The other life challenges, falling thick and fast. Not sure what I mean? See my last post, Silent Dominos.
So while still dealing with Mum’s recovery and ‘what next’ (she’s amazing by the way) and my peripheral neuropathy and hand malfunction… along came the next three dominos:
- Changing treatment, care team and feeling cast out into a new uncertain hospital process
- Dad’s Melanoma came back
- My cancer got worse
Who on earth had it in for my family? Who had we unintentionally, unwittingly, annoyed?
All of us with cancer. At the same time.
We didn’t deserve this. No one does. I needed to remind myself:
Cancer doesn’t care who you are or what you have or haven’t done. It’s simply not that choosy.
Posted in Cancer in my family, Chemotherapy for Myeloma, Myeloma Treatment, Pain, peripheral neuropathy, Symptoms and Side Effects Tagged with: Cancer, Chemotherapy, feet, hands, Myeloma, peripheral neuropathy, pins and needles, Side effects, Treatment
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?
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.
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?
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?
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?
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?
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?
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?
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…
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.
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.
3 Cameron, L. D., & Leventhal, H. (Eds.). (2003). The self-regulation of health and illness behaviour. psychology press.
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