We all experience our cancers differently and these experiences leave us all changed to some extent or another. To be in remission is a strange situation. On the one hand you are delighted that the treatment has worked and that there are ‘no active signs of cancer’, but does that mean that we are ‘cured’? Some doctors use that phrase, my own never has.
Head and neck cancer can be extremely life changing for some people, one of my initial fears was that I would have surgery or treatment that rendered me unable to speak or eat. I am grateful that this is not the case, I certainly wouldn’t have been able to go back to teaching if that had been the case. That’s doesn’t mean to say I have come through this complete. A term I used in counselling was ‘not all my scars are visible’ and this is so true on a couple of different levels. Physically, my mouth and throat have undergone changes; emotionally I have had scars to heal.
As time passes, the most obvious visible side effects of the radiotherapy are easing. As warned at the outset my hair thinned as a result of the Cisplatin and I lost all my hair at the back of my neck, up to my ears. I have often joked about my undercut and proudly shown friends where my regrowth has got to – documenting this progress on Instagram. Fifteen months on from treatment finishing and the regrowth is almost shoulder length, soon approaching a point where I can consider ‘levelling-up’. I am also happy that more recently I have noticed regrowth on my hairline, so I am looking less like I am balding, and my hair does genuinely appear to be thickening all over. Not being able, or some days inclined, to wash it every day last year I can now eek it out to only being washed every other day, so I get the bonus of an extra half hour in bed! I am also much less self-conscious than I was before this venture, so will happily leave the house with less or no make-up, all adding credits to the sleep bank. The other visible impact was the dryness and burns on my neck. About 2-3 weeks after treatment I was able to stop wearing the Polymem roll and like a butterfly came out of the chrysalis with a healing neck. Over about a week my neck was about where it was going to be. I do have some spider veins on the right side, where the radiotherapy was targeted. Previously I would have looked to conceal these somehow, but they are one of the scars that has become the map of my life. I do slap on the factor 50 if I am going to be in the sun, as the skin is delicate in that area. I also moisturise the area to keep it supple and try to rub in some Bio Oil to help reducing the scarring a little.
I was never a bikini wearer but having been on the unrecommended diet that is tonsil caner I have lost enough weight that I could maybe contemplate it again at some point. That would be when you might notice the other visible signs of what my body has experienced. I have my very small blue freckles, the radiotherapy tattoos, one on my sternum and the other just below my navel. To be fair, very few people will ever get close enough to see those they are so imperceptible, the higher of the two is my daily reminder as I dress. Slightly larger is the silver dimple where my PEG stoma was. I couldn’t believe how quickly that healed up. When I was first told I would have a PEG I was distraught, the idea of some alien object sticking out of my body. I was ashamed of it and wouldn’t let my husband see it until I have got used to it. My loathing of it was only made worse by the pain and discomfort it caused in the first week or two of having it fitted, and then ongoing as it got infected and oozed tummy snot all over my clothes. Then, when I was unable to eat it became my saviour, the only way to keep the calories and medicines going as when I couldn’t swallow. Teaching myself to eat again wasn’t easy, it didn’t take much to make me sick. I was desperate to have the thing removed once I was eating but had such a battle maintaining my weight removal was delayed. I was delighted when a date finally came through, the day before term started in September. If I had the local anaesthetic, I wouldn’t be able to drive or go to work the next day and I so wanted to start the year properly. I chatted it through with the doctor and he agreed that we’d try with just the numbing spray. It wasn’t the most pleasant experience having to swallow the endoscope and then feeling the plug pull back up through my throat, but the whole process was no longer than 10 minutes. My throat felt bruised for a few days, but otherwise fine. I have a patch on my stoma for two days and after that the scar slowly faded. Occasionally when I am walking the dog I geta twinge where the PEG was, no pain, just a slight reminder that I once has a hole right through to my stomach that kept me alive. I guess it’s the internal scar tissue pulling slightly.
My mouth is where the real impact lies. Radiotherapy kills off your taste buds and salivary glands. I have been fortunate in that I have always been able to produce some saliva, the only time I now experience a completely dry mouth is overnight. This does however have an ongoing impact on eating. In the early weeks and months of recovery my mouth and throat still had the mucositis from all the burns, this makes it tender, so there is a serious need to avoid some foods. Spices, pickles, anything sharp or acidic would sting and cause small ulcers to appear. I would need to use Caphosol to swill or Gelclair, but these would generally work within an hour of so and by my next meal my mouth was good to go. Over the months I have become more adventurous, but spices are still a no-go. I recently had a veggie sausage roll, that hadn’t said there was chilli in it, it nearly blew my head off! The strange milestones haven’t necessarily been the first time I have had something, but more noticeably the first time I have enjoyed a pizza, beer, pastis and vodka. Enjoying food isn’t something that happens a lot these days, food is fuel is still pretty much my mantra. I has taken about a year for me to start enjoying some things. It was at least eight months before I could use onions or garlic, I think the dryness just meant that the taste clung to my mouth. No amount of toothpaste or mouthwash would get rid of it. That has left me even more reliant that previously on sweet food – not great when your teeth are now vulnerable! Biscuits are beyond me, unless they are dipped in coffee or hot chocolate (never been a tea drinker). The dog now knows the sound of the coffee machine and is fully alert from the deepest slumber within two seconds of it going on. Her treat started with the dry end I couldn’t face, now she has some very plain treats I have to ‘share’ with her if I want a dipped treat.
Water is a head and neck cancer patient’s best friend; I am never far from a glass / bottle. You need it to help wash down food because you just don’t produce enough saliva to do that. Annoyingly I have found I also need a good swill at the end of a meal as little bits of food just cling on. I can’t get through the night without a few sips now and then, followed by a pea sized Bioxtra gel to help keep my mouth moisturised. When I do manage 4 plus hours it is guaranteed my tongue will be stuck to the top of my mouth. The relief from the water is miraculous. I have now managed to get to a point where I can take the dog for a walk for an hour first thing without taking water, so long as I have a good drink before I set off. At 6am you don’t bump into anyone, so not talking helps. My dog walking kit does still contain an emergency saliva spray though, which does get called on every now and then. Drinking the water doesn’t just help with the obvious mouth dryness, it keeps the dreaded mucous at bay.
As previously mentioned, I have developed the ability to produce super snot since my treatment. This really came to the fore in my recovery stage. But over my first winter I have had three belting colds. I haven’t felt ill with them particularly, so long as I stopped taking my immune suppressants to help me fight them off. It has been the gunk my sinuses produce. The only way to survive them (in addition to the two courses of antibiotics to clear infections) have been to get the old nasal douching kit out. At peak cold I have to do this morning and night, just to help keep moving it all out of my system. This way I can continue to breathe normally and not choke on phlegm. Even when I don’t have a cold I produce serious ‘fur balls’. I’m not really sure where they come from, but I am trying to track a pattern. Eating can often be a cause, I am just trying to pin down specific food triggers. About five minutes after eating I can feel a lump forming somewhere between my sinuses and my throat. I honestly could not tell you if the lump comes up or down, but I generally need a bloody good cough to release it and a tissue. I have had to get used to doing this wherever I am, not great when it is in company, I do try and manage it as subtly as possible. I guess this might just be something else I have to learn to live with.
The radiotherapy and PEG can leave you with reflux, although I was being treated for that before my diagnosis. About a year after treatment I noticed my voice was sounding scratchier again. This was obviously a worry as the slightest blip sends us spiralling into doubt about our remission status. I mentioned it when I was at my check up and the next time there they arranged for the speech and language therapist to attend. Both the doctor and SLT had a good look at my vocal chords with the nasendoscope. It did look like there was some residual oedema around the area and some redness. I was prescribed Gaviscon, to take before going to bed and told to sleep propped up to prevent silent reflux in the night. Both of these seemed to have helped considerably. I also attended a session with SLT and have extra exercises to warm up and cool down my vocal chords. Due to teaching, voice was always one of my teams’ concerns. Work have been great with the teaching rooms and classes I have this year, ensuring I get my voice breaks, but inevitably the job takes a toll on this part of my body and makes recovery slower. Thankfully my recent check up has shown further improvement, so I keep on with the exercises.
The only other physical side effects are the lymphedema, or turkey neck, that many of us encounter. The lymph nodes in the neck have been irradiated, so they don’t drain properly. This can lead to swelling. So much for having lost weight to get rid of the double chin, some days you can’t tell. To help with this I massage my neck, stretch my jaw and rotate my shoulders, all supposedly good at helping to drain the area. I can tell if I forget for a few days, so I guess it is doing the job. Exercises are the other part of the new daily routine that can’t be left out. I don’t do the full set I was given at the start of treatment; it is just impossible to do all the physio I have been advised to for the caner and rheumatism and work full time. However, if I don’t stretch my jaw and tongue, I feel the trismus start to creep in. I know of people who are still doing their exercises four year later. They have become part of my routine driving into work, which is why I can tell if I have forgotten in the holidays! If you live in Staffordshire and see some mad woman pulling faces and sticking her tongue out in different directions in your rear-view mirror, it could be me. If you live elsewhere, don’t fear the crazy person, it could just be someone like me making sure they can continue talking and eating after having gone through the hellish treatment. These are just some of the routines that are part of my life now.
The invisible scars are the ones that haunt you and catch you out. There is the survivor guilt, which is partly feeing guilty for being here and having come through it in better shape than some other people, but also thinking that I should be doing some amazing fundraising or living life so much fuller and to the extremes. The reality is that I am grateful to be here. I do experience life on a different level now. The simplest things are so much more appreciated. I see the beauty of nature in the plants growing in the garden, the way the sunlight shines through the trees in the woods where I walk my dog, the birdsong and nothing else to listen to early morning. I liked these before, but they contain a new magic, I have an appreciation so much greater than before. This also helps me deal with things better. Life’s petty annoyances wash off me so much more. Even at work, a deadline can be set but I no longer break myself trying to meet it. I have recently described one as delusional. It doesn’t mean I have become a slacker, just more attuned to my body and my health. If I need to rest, rest I will. This has also helped me to say no without any guilt. If I can do something I will, if I really want to do something I may push a little more to do it, but I am not making myself ill for anyone else. I spot my limits now and I am getting better at telling people when I am there, and accepting help with managing this. Don’t be lulled into thinking life is all rosy though. There are times when I am exhausted, not just physically. Food is a breaking point all too aften, I just don’t know what I want, being asked and having suggestions made winds me up to the point I want to scream or cry. I would say 50% of my breakdowns have been food related. I also get moments of unbelievable sadness, it can be a simple memory, or looking back at how far I have come and I become overwhelmed by it all. I still have nights where I can cry for a couple of hours and forget why I am crying. The recent death of Dame Deborah James really hit me. I had only started to follow her more recently, but the incredible efforts she went to in order to raise awareness and funds put me to shame. I feel I need to do more to help others on this shit show. I still need to find my big idea though.
I am lucky, I have come through this more or less in once piece, physically, emotionally and mentally, thanks to the help of my medical teams, my husband, friends and family and the Macmillan forum. We can’t stop cancer changing us but we can determine how that change manifests. I always say to my students that life throws up hurdles that we have to overcome. It is not a straight path but has lots of bumps and curves. How we navigate those defines our character. We can decide if we want to play the victim, feel sorry for ourselves and allow cancer to rule us. However, we can look it and ourselves in the eye and decide that we are stronger, that we have seen the darkest of places that will make the bright points shine even more for us. If I can life my life in that way, I will make my mum proud, I will be paying back everyone who helped me through this. If by writing this I can help someone else to see things similarly, then something good has come from this hell.
