Reflections 10 years on from Mouth Cancer.
It is hard to imagine your future when you are diagnosed with cancer in your twenties. Ten years ago I was diagnosed with mouth cancer and had drastic surgery to remove the tumour and reconstruct my mouth. Today I am a wife, a mother of two and have finished my long studies for my PhD in cancer research. Although i feel the after-effects of my treatment in my everyday life and my recovery has taken much longer than I wanted, I have so much that I’m thankful for.
More about my experience of recovery from mouth cancer and what I’ve learnt along the way:
10 years post cancer is a big milestone to reach and definitely well worth celebrating! Despite life now being completely different to 10 years ago, the effects of my treatment remain evident in my everyday life. The longer lasting effects that some cancer patients endure are rarely given air time, so I have been reflecting on what I have learnt over the last ten years and the longer term consequences of mouth cancers.
For me it began when I was 24 years old, with pain and unexplained ulcers in my mouth, which were affecting my eating and speech. As I was PhD student studying cancer, I worked with oncologists who encouraged me to chase my GP up for a quick referral. It was quickly confirmed I had squamous cell carcinoma on the base of my tongue and I would need drastic surgery. A 12-hour operation followed to remove the tumour, tissue on the base of my mouth, half my tongue, 5 teeth, lymph nodes and some of my jaw bone. My mouth was reconstructed with blood vessels, muscle and fat from my belly. I re-learnt how to eat and speak with my new mouth, and had more operations in the following years for further reconstruction and to fit teeth implants. It was a slow recovery from an impatient 25-year-old desperate for more normal life!
I am incredibly grateful for the new mouth my skilled surgeons made me, but perhaps unsurprisingly it is not as good as the original. It quickly became clear that speaking or eating was very painful. I was dismayed when a pain expert diagnosed chronic neuropathic pain and told me there is no good treatment for this condition. Unfortunately, after ten years of trying many treatments (more drugs that I can remember, several operations, psychology, alternative approaches, and a pain management program) I’ve learnt this is true and must manage this condition carefully using a combination of medicine and lifestyle changes. I am naturally a chatterbox so restricting how much I talk and socialise to prevent a bad pain flare up has been a huge challenge for me.
My doctors also warned me that my cancer and treatment often leaves patients with long-term fatigue. According to Macmillan, 90% of cancer patients have fatigue at some point, which is hardly surprising given what our bodies have been put through. Now it is impossible to differentiate what causes fatigue: my original treatment, chronic pain and the medications or having 2 small children!
Despite all of this I believe my experience has left me with a different perspective on life and there have been many blessings along the way: in the last ten years I did eventually finish my PhD and my husband is still standing by my side with the addition of 2 children. I wanted to share what I have learnt in the last ten years, especially for anyone who is on their own cancer journey and may be facing similar struggles.
Processing being unwell
For me it was much easier to process cancer than chronic pain, perhaps only because my doctors thought they could cure me, whereas the chronic pain cannot be fixed and it is harder to process when you are also in the midst of experiencing pain. The challenge isn’t only looking after myself but also dealing with my friends and family around me. They want to fix the situation and struggle to comprehend that there are no good fixes as much as I do. It has taken me years going through anger, guilt (especially when it comes to struggling to do things like reading my children stories) and finally acceptance. Just as any grief, it takes time to heal and it isn’t a linear journey.
It is okay to live life in the slow lane
Chronic pain prevents me from being able to do all the things I want or that others want me to do. This is a real loss. It is normal and okay to mourn this loss. Further down the line, I found it was an opportunity to learn new things which don’t involve using my mouth. I have learnt over the years that almost anything I do with other people causes pain and I have to limit socialising to manage my condition. Instead, I have found new things I can do which give my mouth rest. I find sewing, other crafts and gardening helpful to keep my hands and mind busy. Morden life is often fast-paced filled with activity but it doesn’t have to be, life in the slow lane is also good.
Prioritise and pace
When you have to live life in the slow lane or when life is just bursting full of stressful hospital appointments it is important to carefully manage your time. I have found it important to make space for things I value. For me, this means intentionally prioritising my family, rest and have given up my career. It is healthy and good to say no to people or things and my experience is that people normally understand why.
Rest, rest, and more rest
Being ill is exhausting. Even so it doesn’t take long for me to be thoroughly bored of resting – there is only so much Netflix to watch! Sometimes rest means a long nap but other times for me it just means not using my mouth. I found it really helpful to see rest not as mere laziness or the absence of activity, but as something that is healthy. I now schedule in restful activity to my days.
Getting a good night’s sleep is tricky when pain is bad, and by the end of the day I’m normally in a significant amount of pain. I have found a combination of resting my mouth before sleep, increased use of pain medication before bed and straightforward sleep hygiene techniques helpful.
Plan for flare-ups and bad patches
Undergoing cancer treatment and chronic illness are not normally constant. There are good patches and bad, some last hours, days or months. I have found it really helpful to have a plan of what to do when I’m in a rough patch or when pain is excruciating. This includes what I say to myself, things to do to rest or distract myself, which of my family and friends are helpful to talk/write to, as well as medical options. This means I don’t need to think but just do what I planned until the pain eases.
Sometimes life can just be really hard, especially when it doesn’t meet your expectations. I don’t buy into the just-be-positive thing. However, I have found it really helpful to stop and see what is good and what I can be thankful for. For me, it is often about taking a step back and observing the simple things in life. Also I have found it helpful to find what gives me joy and do more of these things such as spending time playing with my children, reading a good book or completing a craft project.
Medical decisions are rarely simple; medicine is more an art than a science after all! We are not just physical so it is important to be proactive and ask questions. Most treatments and drugs have side effects which need to be managed. I frequently take a list of questions into appointments so that I don’t come out of an appointment and then remember what I should have said! I find it helpful not to go alone, to have another pair of ears in the room.
I have found it so encouraging hearing from those with similar experiences and hearing their tips and ideas in safe environments. There are a lot of community groups you can join via hospitals, by contacting TRACTion or even just through Facebook!
Close family and friends
Communicating clearly when talking is painful can be really difficult. I have often not done well when my needs and other peoples’ expectations of me have not matched. I have found it helpful taking a step back from a situation and trying to write a clear explanation of my difficulties and how these can be resolved. Those close to us want to help but often don’t know how to, after all the consequences of mouth cancer are uncommon.
Speech and eating problems
Problems with talking are not uncommon after TRACTion cancers and there is support available but it isn’t always easy to find. The sorer I am, the more effort it is to speak clearly and to not slur my words. I have found a text to speech app on my phone helpful but it is sluggish and old fashioned writing and reading is faster. I have contemplated learning sign language but I am being held back by the fact it is only any use if someone can understand my signs so instead have a few signs that allow me to communicate essentials to my husband when talking is too painful. It is much harder to communicate with people who do not know my situation, so I end up avoiding these situations especially on a bad day or I keep a close friend near.
Similarly, problems with eating are also common. I have become knowledgeable on soup making, what blends well and developing menus that allow my family to eat similar things to me. Eating out is trickier, but I have learnt that simply asking for adaptations from the normal menu to suit what I can manage are normally not a problem for cafes and restaurants (if you mention cancer, they don’t say no!). The tricky thing is working out what will be easy to eat, as often it depends on how things are cooked. Check out TRACTion’s really helpful recipe book for ideas on soft and blended recipes.
The last ten years have not been how I planned or expected, but I have learnt a lot and I am very thankful for all the blessings along the way. My major reconstruction treatment was a fairly new surgical technique and is rarely carried out on someone in their 20s, so time will tell how good my reconstructed mouth is in years to come. I have moved on from cancer but my life is far from “normal” and I’m left with a fairly unique disability.
If you want any more information beyond what has been said in this post, more support regarding TRACTion cancers, or want to contact me, please email firstname.lastname@example.org.