Rhea is a pain management clinical nurse specialist and cancer survivor, sharing her four top tips on dealing with pain after treatment...
When I was given the ‘all clear’ after my cervical cancer, I realised I had to learn to adjust to a range of side-effects including chemo-induced peripheral neuropathy (nerve damage) and pain from radiation damage. This didn’t happen immediately, but the skills I learnt have allowed me to return to work full time, study, raise a family –and I even completed my first walking marathon in aid of a local charity.
As a cancer survivor, but also as a pain management nurse specialist, I have learnt that hurt doesn’t always equal harm. (Lorimer Moseley has a great short and very entertaining video about his experience of pain with and without damage.)
Most people are used to pain due to a broken bone or burn: pain that you can explain with X-rays and scans. This pain is easy to understand. However, sometimes you can experience pain without any of those objective findings. Sometimes, it is due to changes in how your nerves and brain process pain.
For example, the pain I experience in my feet and legs is down to the nerves being super sensitive due to chemotherapy. Although there was initial damage, these nerves have repaired as much as they can and now the pain is due to this increased sensitivity and reduced tolerance to stimulus such as shoes, socks, movement etc. When the pain increases, as it often does at night time and after a busy active day, I know that it’s not because I have caused damage to myself. Although it is unpleasant and annoying, it is a “safe” pain and because of this knowledge I can, to a certain degree, ignore it and carry on regardless.
This knowledge takes the distress and anxiety away from the pain which in turn makes it more manageable and allows me to continue to have an active life.
I wasn’t always able to see it that way. When I first developed the nerve pain in my feet I thought I would never be able to walk again. The pain was so debilitating and all I wanted was for the pain to go away. I would often live in flip flops and the pain would disturb my sleep and my mood.
I also have a sandpaper sensation in my fingertips and carpal tunnel, hypersensitivity across my pubis, and pain in my back and hips. I struggle with balance and weakness in my legs at times; especially when tired and have had several falls. My left leg goes completely numb when I sit on the toilet for a prolonged time; which I do a lot thanks to radiation which has also caused pain in my bowels and bladder!
But while pain is a daily occurrence in my life, I’ve learnt how to manage it. Educating myself about my pain, what it is and what it isn’t (annoying but safe) and using a number of tools to manage it has meant that I can continue to enjoy the same things I always have in life – albeit with a bit of thought and planning.
Motion is Lotion
Keeping active helps – motion is lotion and our muscles, ligaments, joints, and nerves all need to move to function properly. For the musculoskeletal pain I experience across my body, particularly in my right hip, I make sure I walk to and from work daily (5k) as well as walking the dog. I jog three times a week as part of ‘Couch to 10k’ as I’m running the Cancer Research Race for Life in June.
I have started swimming once a week when my daughter has her lessons and I do a 7 min high intensity interval training app that I have on my phone three times a week; as well as performing upper and lower body stretches to help stretch out my hip, buttock muscles and hamstrings which are all very tight.
Not only does this activity help the pain but it also manages my mood, weight and helps with bone health, all issues I now have to deal with being post-menopausal due to treatment.
Lorimer Moseley’s and David Butler’s Protectometer discusses ‘DIM’s and ‘SIM’s – neurotags (pain pathways or memories) related to pain.
DIMs = ‘Danger in Me’, the things that can turn pain volume up.
SIMs = ‘Safety in Me’, the things that can turn the pain volume down.
To manage my pain I increase my SIMs – for me these include heat, puzzles, reading, chatting with friends, my work, and having fun with my family. All of these help to provide me with a distraction from the pain and therefore reduces its impact.
I also work to manage my DIMs – for me things like dealing with finances, my feet getting too hot, prolonged repetitive actions, my kids arguing, scans, and doctors’ appointments are all things that increase my pain sensitivity and reduce my tolerance of pain making me more irritable and snappy. When I need more help, I stick with pain management options that help to keep the pain volume on a gentle hum and don’t cause me any unwanted side effects, such as heat/cold, a TENS machine, acupuncture, and massage, which all help give the brain another sensation other than pain to focus on and activate our own natural pain reducing pathways. I also take good old paracetamol. These don’t remove the pain completely but they reduce the volume enough to allow me to relax and improve my level of function.
The Anxiety of Pain
Unlike my nerve pain, the pelvic pain I experience is much more distressing. This pain is due to radiation and I experience sharp pains in my bladder and bowel, and a gnawing aching pain in my hip radiating into my groin that reminds me way too much of the original tumour pain. While I know there’s no danger to the pain –I’ve had scans and all is well; it’s often very distracting and can cause anxiety. While the nerve pain I tend to associate with the treatment that cured me, the pelvic pain reminds me of the dark passenger that tried to kill me!
Pain is a strange and fickle mistress and depends largely on context and whether the brain perceives signals from within the body and the environment to be dangerous or not. Once we accept that our pain is not an actual indicator of tissue damage (just look at the pain of a banged elbow or standing on a Lego brick, definitely 10/10 pain score with no actual damage), the more we can start to live alongside our pain and not fight against it. Like quick sand, the more you fight it the more it drags you down.
I often see my pain system as a smoke alarm. The sensor triggers to warn me that there is a potential danger (hip pain) however it is up to me to decipher what that danger is. Is there really a fire (cancer recurrence) or just a piece of burnt toast (musculoskeletal pain)? Once I have decided the risk I can then act appropriately e.g. call emergency services (my oncology team) or open a window and turn the alarm off (apply heat, stretch and keep active).
But I have to admit, it has been a difficult and fine line to walk between being complacent and paranoid. It has taken a few false alarms to get used to my faulty sensors as I experience a lot of anxiety when it is time for a follow up with the oncology team, or when I’m waiting for scan results (scanxiety!).
There are brief moments where every cough, headache, or back ache feels like a possible recurrence. To manage this, I utilise some of the skills I have developed to manage pain, particularly from psychological therapies such as Compassion Focused Therapy, Cognitive Behavioural Therapy and Acceptance & Commitment Therapy. These skills include relaxation and breathing techniques; accepting what I cannot change; being present and mindful; realising that thoughts are not facts and that they can be challenged; and treating myself with compassion, as I would a loved one.
9/10 times the symptoms settle along with the fear, if they don’t I call my nurse specialist for advice, as talking it through helps me find perspective.
Time for Change
Education is empowering when combined with validation, which is often neglected in pain conditions. I have often felt that I should just be grateful that the cancer is treated and the pain is just an unfortunate side-effect that I need to put up with.
I’m not alone in this. The number of individuals living with and beyond cancer is growing. Tools that give survivors the skills and knowledge they need to manage long term effects like pain and improve their well-being are vital.
I feel there is a gap in the follow up care of cancer survivors: we need to bring together knowledge of persistent pain and cancer. There is generally great access to palliative care for people who are living with cancer, or at the end of life, but I feel that people living beyond cancer need better access to bio-psychosocial (biological, psychological and social) pain education and support. It is imperative that people have strategies and tools to manage their anxieties, fears, and their pain so they can return to as normal a life as possible.
Professor Lorimer Moseley, a leading expert in modern pain science who was mentioned earlier, has seen this gap and has set up a project to fill it with a targeted self-management program for cancer survivors living with chronic pain.
My name is Rhea. I am a 36 year old wife, mother of two (and one fur baby), pain management clinical nurse specialist and cancer survivor.
My son was just 12 weeks old when I was diagnosed with stage 2b node positive cervical cancer. I had complications throughout my pregnancy, but my son was healthy and the placenta normal so the symptoms were put down to pregnancy. After giving birth my symptoms worsened and the cancer was found. Treatment included five weeks of chemotherapy (I only managed three due to severe illness and dehydration), alongside external radiotherapy and followed by internal brachytherapy.
When I was told I was in remission seven months after my diagnosis, I thought that a sense of normalcy would return. I didn’t expect to learn that I would need to adjust to living with persistent pain.
Thank you for this, explains a few things for me. I get pain in my feet this usually happens when inactive, eg. in bed, sat at my desk at work and sat watching TV. When I stand up for a few seconds I get sharp pains in both feet but then goes. Like you I don't let it control me, mine is not as severe as yours but have ways to deal with it, and you have mentioned them here. Wishing you well and thank you again
A really interesting read, thank you