Following my ‘2 week’ emergency referral to an ENT specialist made in August, the letter finally arrives inviting me to an appointment on 6 November. This will be for an endoscopy, so I arrange the time from work, not really fancying trying to teach later that day. This becomes the first of many road trips, with my husband by my side through the journey, but waiting in the car park as I go through tests and checks due to Covid. I run through the symptoms I have been showing, the doctor has a good look in my mouth, prods my neck and pops the camera up my nose and down my throat. He can’t see anything, however, is concerned about the symptoms I have been showing and lack of improvement despite various efforts. He decides to take a cautious approach and refer me for an MRI.
A couple of weeks later my letter arrives inviting me to attend the MRI scan on the evening of 1 December. Whilst waiting one of my Year 10 classes had three cases of Covid, so I have been working from home self-isolating. Funnily enough, the date of the MRI is the day I am due back. At this point the news is full of ever lengthening waiting lists and cancellations of appointments due to Covid and the strain on the NHS. This concerns me, especially given the length of time from referral to seeing the specialist. At the end of lessons on my first day back in school I check my phone, I see a couple of missed calls from the area code where my MRI is due to take place. My first thought is that they are calling to cancel, having just confirmed the day before that I am Covid free and save to attend. I call them back, to be told they have an earlier slot. I agree with my boss I can leave now and go for the scan on my way home. As previously mentioned I did feel like a bit of a fraud going for this as I had actually been feeling a bit better.
The ladies at the hospital were lovely, I’ve never particularly felt claustrophobic but can’t say I particularly enjoyed laying in a buzzing and whirring tube. Thankfully it didn’t last too long, the trickiest bit was changing as my hands by this stage were getting stiffer and the oedema making them very swollen – not the best for fastening a bra, and life has gifted me sufficiently that the idea of going without one wasn’t worth considering. Like many other things, going through the next few months was about to throw new light on that though. About 30 minutes after arriving I was on my way back home, happy that I would be sat eating dinner by the time my appointment should have been. Also glad to be back at work and feeling like life was back on track.
3 December was about to change all of that. See ‘The Cupboard Call’ for the details, but that was the fateful day that I took the lunch time call telling me I had malignant lumps in my neck. Home I eventually went and onto Dr Google. What a mistake! I had all sorts of fears rushing through my mind. After an hour of two I had determined that throat cancer meant having my vocal chords removed and needing a stoma, I wasn’t quite sure how I would ever be able to go back to work if that was the outcome. I was even thinking whether I could wear scarves to cover it, providing of course I was able to speak.
After a few days my letter arrived inviting me to New Cross on 15 December to see the ENT / Maxillo-Facial Consultant. Didn’t have a clue what to expect on this day and most of my online searches related to practices in the US, so weren’t of that much use. Thankfully my Y12 Accounting class had just taken their exam and had other exams coming up, so we agreed they could work from home that morning. In the afternoon I was going to teach my Y13 BTEC class via Teams once I had got home, giving them a slightly later start to their lesson. This meant no impact on my colleagues. As the day played out, this plan changed. I arrived for 9am and sat waiting so almost an hour before being called through to see the consultant. I explained my symptoms and how I had got to this point, in response he told me that if I had been ill with head or neck cancer for that long, I wouldn’t actually be standing in the room – talk about making me feel like a fraud. He couldn’t see or feel anything, following another nasendoscopy and prodding and poking. My MRI results hadn’t been sent through, which was somewhat frustrating, and I just kept repeating ‘why was I told malignant lumps then?!’. He decided to send me for an ultrasound. Given the Covid situation, I messaged my husband who was sitting in the car park with an update. Our poor puppy would be crossing her legs back at home by the time we got back. Knowing I had at least a couple of hours still here we decided he would pop home and let her out. The radiographer doing the ultrasound and his nurse were lovely. The scan was a little uncomfortable as they were pressing on my neck and throat, but otherwise fine until I heard the phrase ‘Hmm, not very happy with that’. I turned to look at the screen and he explained he could see a lump about 2 to 2.5cm. Not something you want to hear, but given my earlier experience I felt a little vindicated. He decided to take biopsies. I had been told I should get biopsy results in an hour, unless they had to take larger samples that would take a few days and then go back up to see the consultant. The radiographer told me he wanted to take 3 needle biopsies, with a slight incision, this meant I wouldn’t get results today. He was lovely, but being told one of the risk factors is that the nick a vein and you could bleed to death is a little daunting, but just leaving cancer in my throat was not an option, so of course I consented. Some local anaesthetic, slight discomfort and a big plaster on my neck later it was all over. Whilst doing this the nurse had called through to book me in for a CT scan. I wasn’t sure if it was comfiting that they were thoroughly checking, or worrying that this was very serious. Again, given my oedema I was starting to worry I had cancer and it was moving to my bones. My mind was in overdrive. I took the lift back down and went to wait for my scan. Looking at the time I realized there was no way I was going to make it back to teach my lesson, so messaged my boss and my students to let them know to keep working on their revision at home. Off I went to the changing room, gown in hand to get ready for my scan. The two young nurses carrying this out were lovely. I wasn’t sure if one was an ex-student – this was to become a recurring concern, especially as my treatment started, but more on that to follow. Canula fitted, warned I would feel like I had wet myself and not to worry about the buzzing and clicking I was on the bed, they went to their safe room and the scan commenced. A glass of water and rest later I was deemed fine to head back across the hospital to see the consultant. At this point I decided to message my husband, we live about an hour away so I hoped to be done by the time he got back. This meeting was pretty brief and I was told that essentially there were 5 things the lump could be: throat cancer, in which case I would be back to see him; cancer elsewhere that had spread to my neck lymph glands, in which case I would see someone else; tuberculosis, something I hadn’t even imagined it could be; an infection, which I doubted given the number of blood tests my GP had carried out; and I honestly can’t remember the fifth. To be fair this meant that I had a 60% chance it wasn’t cancer, which felt like much better odds than the day had started with. Bizarrely I felt like a bit of a fraud in terms of working from home, but given that TB is a reportable illness, there still remained plenty of reasons for me to continue self-isolating. I relayed all of this to my step daughter who called whilst I was waiting for my husband, then him, my dad, my brother, my boss, etc. It was now a waiting game for a week or so.
On 22 December I decided to call the hospital. It took about 5 calls to track down the right number for my consultant’s secretary. When I got through to her I explained that if at all possible I would like to know before Christmas, fearing in might now be January when I heard anything. She told me he didn’t like to say anything over the phone, but she would leave a message. I didn’t hear anything back, so when it got to Christmas Eve we resolved to put this out of our minds as much as possible and get on with the next few days. I baked mince pies, had the traditional sherry and started to play carols – we weren’t going to church due to Covid and I love the Christmas Eve family service. At about 4.30 the phone started to ring and my husband passed it to me hurriedly saying ‘it’s a Wolverhampton number’. It was my consultant, doing the thing his secretary had told me he never did. I really appreciated his honesty, I’d shed my tears three weeks earlier at the shock so when he confirmed that in all likelihood it was tonsil cancer I thanked him, he said I had to see him six days later and would have my tonsils removed in January. I put the phone down and hugged my husband, slow tears rolled down both our faces, we smiled, kissed and resolved to let everyone enjoy Christmas before we told them.
30 December is my brother’s birthday. I had told both him and my Dad that we were heading back to hospital and that I would be in touch. Again, not knowing that now we were on the path my husband could accompany me I made my way to the third floor in the lift alone, whilst he waiting in the car. This time my consultant was much softer in his approach, he explained the whole HPV positive / negative situation, and how treatable throat cancers are. He took me through what he would do in my operation, including the additional biopsies to the tonsillectomy, and that these would be used to help fully diagnose my cancer and work out my treatment plan. I was then escorted to another room with a lovely specialist nurse, she handed me a pack full of booklets and information, explaining the whole process and support that would be provided. I felt safe in their hands. She also said that in future my husband could, and should, come to my appointments as two sets of ears are better than one, especially when there is so much information to take in and emotions are running high. I then went to have my pre-surgery checks, the nurse was lovely. I had my drug bag with all my medicines that she logged. We got home and I made the usual calls, birthday or not we had agreed to be honest about the outcome of the day.
I had 3 days of mad planning and organizing bits for work. I phoned all of the parents of my tutor group to let them know I would be off for at least a couple of weeks as I had to have some surgery. Some I have known for a long time, all ten years I have been at the school the way we have vertical tutoring and siblings in the same group. They knew I’d had throat problems so I was a little more open with them, but avoided the cancer word for now. Especially as some had family with Covid and various other things going on.
Every now and then I nag at my husband that we need to update our wills. In all honesty my last one was written ‘in contemplation of marriage’, his usual response is ‘it all goes to you’, but he would be intestate and I fear bits being contested with the ex and me having to wade through it. The idea of a general anaesthetic was preying on my mind, fearing I may never wake up. I’m overweight and taking inhalers for asthma, so I was fully aware that the risks were higher, add into that the possibility of contracting Covid in hospital. I decided to e-mail my husband and brother with updated terms for my will – hoping this could be considered if I didn’t make it through. I packed my hospital bag and had a restless night. 7 January arrived and off we went. I hugged my husband desperately as he walked me to the hospital entrance, in my mind I was thinking I hope to see you again and isn’t it shitty that you have to drop me like this. Tears rolled down my cheeks as I walked along the corridors to the day surgery ward. Once checked in my nurses were lovely. I grappled with the gown and did my sample for a pregnancy test for them, then hopped on the bed to wait. One of my consultant’s team came along, explaining the operation, then he did too – again there was a reassuring warmth to him today that I really needed. Next was the anaesthetist's team and the main man himself. I felt very reassured that I had a good team on this. The oedema in my ankles was a slight concern, so we made alternative plans to wearing compression socks as they were worried these would be too tight. I was walked through to the theatre, taking my pillow with me, remember in the Covid era there’s no separate room for pre-meds and knocking you out – just straight into theatre. The junior anaesthetist’s who were there kept apologizing if it was daunting, but the room itself didn’t phase me. They also guaranteed me I had the A-Team on my operation today, which was a huge reassurance. I remember the oxygen mask going on, that’s about it. Next thing I’m in recovery and I recognize two of the faces looking at me, my first thought was ‘I made it, I’m alive’. A sort while to fully come round and I was taken back to the day ward. I dozed, message people to let them know I had come round. Once I’d had something to eat and passed water I was told I could ask to be picked up, it was so nice to go back home.
My step-mum used to be an ENT ward sister, but on paediatrics. She herself had her tonsils removed aged 19, she never warned me how painful it was going to be. That job had been left to my anaesthetist on the day of surgery. I was warned peak pain came at day 7. They were right, at that point I honestly would have allowed anyone to cut my head off. By the end of the two weeks however, with support of analgesics and crushed ice I was merrily eating again. The operation had gone seemingly well and I would receive my full diagnosis at my next clinic meeting.
On 20 January it was quite a novelty not to head up to the third floor in the lift on my own as my husband was allowed in with me. By now I was already used to scanning in for track and trace, checking in at reception and then going to be weighed. Mad how these things become normal routines so quickly. I had been warned that there would be a few people in clinic today, but we were both overwhelmed when we walked in. Its not a massive room, and it looked like about 10 people. My main consultant, his nurse, the consultant radiotherapist and two more of his team, oncologist, dietician, speech and language therapist, two nurses. I was sat in the hot seat in the middle of the room, as I was told it was HPV+ Squamous Cell Carcinoma of the right tonsil. It had thankfully only been found in the right tonsil, nothing at the left side or the base of the tongue. This explained why the wound on the right side of my throat felt deeper. As I also had the tumour in my lymph node they were going for the full chemo-radiation. The standard six weeks for throat cancers, chemo once a week and radiotherapy Monday to Friday. Wham I thought. That had been the worst case as I recalled. Officially noted at T1N2M0 I had a secondary cancer as it had spread from the primary site, but it was still very contained, we had caught it early and it was deemed eminently treatable – they refused to use the term curable.
We were then whisked off to a series of other appointments. Firstly with the consultant radiologist & oncologist. I was taken through all the preparatory steps needed, how the treatments would work and the short, medium and long term side -effects. Some of these are extremely daunting to say the least. The doctors were lovely, no sense of rushing us through it and kept checking if we had any questions. To be fair our minds were pretty much blown away, so the time for questions would come later.
Next I had to see a dentist, to check he was happy with the state of my teeth and have them x-rayed. This was another trip across the hospital, to the same department I’d had my CT scan and ultrasound. Thankfully, my teeth were fine and I didn’t need any extracting before radiotherapy could start. I was also advised to book in with my own dentist before treatment for a normal check up and de-scale. The radiotherapy can cause long term damage to your jaw bones, this is one of the key reasons why the dental checks need to take place. I now have to use a prescribed fluoride toothpaste for the rest of my life as a result of the damage the radiotherapy could have inflicted. Furthermore, any extractions in the future will need to be carried out at hospital.
Having passed this we were then bundled off to spend time with the specialist nurses. There was a flip chart for all the medications I would need to use, the care regime is unbelievable at one point I am sure I counted 50 interventions in a day. There are mouthwashes for hygiene, to numb the area to enable you to eat, and to combat the dryness when your salivary glands are destroyed. Then creams and lotions, to apply before treatment and after treatment, along with special bandages to help look after the skin on your neck as it gets burnt by the beams. There are gels and sprays to help with dry mouth and ulcers. Then the analgesics, and the way they scale up as the pain increases. In this session we also saw a speech and language therapist, I had my ‘swallow rate’ tested to see how strong it was, I had just about recovered from the tonsillectomy so was just within the normal range. We had detailed explanations of how the treatment would affect my ability to swallow and the risk of aspiration, with exercises to do daily to help prevent to great a deterioration. The biggest shock of the whole day, which took me quite a long time to come to terms with was the fact I would be having a PEG feeding tube fitted. I was horrified at the idea that I would have a tube sticking out of my stomach. There has been lots of debate about the merits of this, and I know some people who have refused. I decided to go with the advice, much I was about to regret this in the early days, treatment I was wholly reliant upon it.
Armed with a pack of booklets, leaflets and my consent forms we finally set off home. Treatment would be starting in 5-6 weeks. In the meantime there would be a series of appointments to prepare and I decided to go back to work, albeit working from home, to occupy my mind
