I ‘properly’ returned to work in the September, five months after treatment had finished. To start with I struggled with the fatigue and eating. For most of my colleagues’ morning break is challenging enough, taking a class to the restaurant, getting food and a drink, nipping to the loo ready to walk the class back in just fifteen minutes. Add to that the complexity of it taking longer to swallow everything and the fact that after every meal for the rest of my life I need to clean my teeth with prescription strength fluoride toothpaste – in those very same fifteen minutes. This is one of the many reasons I had some adaptations and was only teaching sixth form. There was the odd occasion where I would question why students were late back from break and then on the odd time I had struggled, they would answer back. I decided to take the semi-honest route and be straight about cancer, recovery and what I had to do. I save them the gruesome details of the huge balls of phlegm I often cough up after eating, having to clear them as part of the routine. This has registered, and when they lost their bonus ten minutes some said their first thought was ‘how will miss have her lunch in time?’, this was heart-warming to say the least. To start with I would use the nurse’s office to chill my shakes, these were the only thing I could consume in the time available. I had one every morning and another most days at lunch, depending on what else I had. Popping in to grab a snack was a regular occurrence in the first half of the year, she was fab at checking the fridge was stocked and reassured me I could just pop in and help myself. I was reliant on these for the best part of six months after returning. On the teeth cleaning front, I was really self-conscious to start with, so have been using the disabled loos to save anyone having to wash their hands with me scrubbing away at my teeth. I had become so accustomed to swilling, spitting, etc in front of anyone during treatment I didn’t realise how self-conscious I would be about a simple thing like cleaning my teeth when back at work. I guess the environment plays a role in this, and just wanting to ‘fit in’.
For lunch I tended to take in soups. Again, there is a time condition that many other jobs wouldn’t be so constrained with, but thankfully sixth form had an extra ten minutes, which meant I could finish my lunch, grab a cuppa and be ready to go back. I can eat sandwiches, but they take time, it is the starchiness of the bread, it just takes a lot to wash it down. Wraps are easier as you can have a fairly soft, wet filling and not too much starch in the mix. The key problem lies in the fluctuating taste. Texture of food is so important. When you don’t make much saliva, everything feels different when you try and eat. Some foods just stick around and need literally washing down with a drink. Others are dry and scratchy. I can manage crisps, and they can make a welcome texture change, but I wouldn’t say I enjoy them. I can make packed lunch then just not feel like facing it later in the day. My constantly changing tastes drive my husband up the wall, something I enjoyed last week is completely unpalatable this. I cannot explain it, there is no rationale, I just don’t particularly enjoy much food now, especially healthy, savoury food. On days where I really struggled for inspiration, I decided to just go with a school lunch, this turned out to be much easier said than done. I honestly can’t eat most of it – chips, potatoes, etc are just awful; mashed potato is a complete no-go for me as though someone has poured superglue in my mouth and a dusting of sawdust. The downside of only teaching sixth form was that they have last lunch sitting, so options were limited. There was one day I literally stood in the servery and just wanted to curl up and cry, there was nothing I could eat. One of our very lovely dinner ladies warmed me up a tin of soup she had brought in for herself. It always bowls me over how the kindness of others gets us through some of the worst moments.
I have got better with eating over the year, but it is still an issue at times. Functions make me uncomfortable, where I have no choice. A friend’s wedding co-ordinator has been fantastic, she basically asked me to say what I could eat, and they’d do it. I do feel frustrated that when planning a meal out with anyone I have to scrutinise the menu. Being vegetarian adds another level of complexity, so much vegetarian food is spicy, and I just can’t manage spices, with the best will in the world. I have tried but they just blow my head off. I guess my mouth and throat just haven’t recovered from the radiotherapy burns yet. Maybe one day? But then spices can affect reflux too, I have been much more careful since seeing the speech and language therapist. Managing reflux has had a marked impact on my voice and I’d like to keep it that way.
Fatigue has floored me at times. To start with I was having an extra hour or two at home one or two mornings a week. This really helped me to build myself back up. When I was first back in every day, I was in bed by 7.30 / 8pm most nights and would sleep through until 6am, only waking for water and the loo, that damned dry mouth again. I can go along for days, almost thinking I am back to my old self and then wham – a huge wave of exhaustion and fog hits me. It is honestly the strength of a tsunami. There is nothing else to do but nap when it overcomes me. Thankfully this is less often, but I am slowly coming to terms with the permanence of it. Initially this was probably a hangover from the chemo-radiotherapy, now I am guessing it is more a result of my rheumatoid arthritis. This means I am slowly learning to pace myself. If I have a big day coming up, I need to take it easy for a couple of days beforehand and make sure I have a fairly easy day afterwards. This takes planning and a lot of understanding form those around you. It also means understanding the emotional toil events can take, as they can be as exhausting as physical effort. When I cry easily at the most stupid things, I know my body is waving a great big red flag at me that I need to take a rest.
Other than fitting in medical appointments and daily physio I can honestly say that’s it really in terms of regular adaptations I need to make. Mentally I think my brain is back to speed again, the chemo fog seems to have drifted back off and my memory is much better. There are the occasional sentences I struggle to finish when a word evades me, but I am putting that down to the menopause, which has thankfully been a breeze so far. I don’t feel that I have to wear the big floppy hat and a scarf on my neck this year. Slapping on factor 50 to protect my neck and limiting my time in the sun have just become routine, hopefully they will help me to maintain my new youthful looks without the sun induced wrinkles. We aren’t holidaying abroad at the moment, but the lockdown puppy and climate change have equal weighting with the struggles of getting travel insurance and needing to keep out of the sun, so I am not blaming that on cancer. In fact, we are enjoying a renaissance of holidaying in the UK, great views and walks with the pooch. I have seen some of the most beautiful sunrises and sunsets this year and we are about to embark on our third holiday this year.
Every September we complete a form that checks all our contact details are correct. On the form there is a question that asks whether or not we consider ourselves to have any form of disability. I struggled with answering that last year. I am not disabled, but after I discussed it with a colleague, I did tick the box for yes due to the number of adaptations that were having to me made for me. That time of year is coming up again and I am starting to debate how I should respond to it this year. In terms of cancer, I am about as well recovered as I think I will get. Not sure how much stronger my voice will be, but it is within normal bounds now – I just can’t particularly shout or project it into large rooms; so, I guess there will always be some limitations in terms of the rooms I teach in, and I will continue using a microphone when needed. I know when I need to take rest breaks and am getting much better at saying so. I have always been unbearably independent, so it is a huge psychological shift to be able to ask for help, probably the biggest adaptation I have had to make! Does that mean I need to say yes again? What actually constitutes a disability? I have at times wondered about getting a daisy lanyard, the one that indicates unseen disabilities, but I have a voice and I can use it to explain I’m not a picky eater, but might need a meal changing, that I am tired, so need to rest. Maybe that means I should tick no – so long as I can manage the rheumatism. To be completely honest though, these are a very small price to pay for being here. Maybe I just change my mindset and get on with it, make the most of every opportunity.
