On 9th January, this year I went to my GP with a tickly throat. He didn’t like the look of my right tonsil so referred me to the ENT department at Boston General. The next day, I was having a camera stuck up my nose and down my throat. The ENT specialist knew something wasn’t right but booked me in for a few scans to check but in the meantime, we’ll just whip your tonsils out! While waiting for a few weeks for my tonsillectomy operation I had a MRI, CT scan, Ultrasound and Lymph node biopsy. On the 21st of Feb I went into Lincoln Hospital for a tonsillectomy. While being prepped and gowned for the op I asked the doctor for the results of my biopsy on my lymph node, she asked if I was with anyone. At that moment I knew it wasn’t good news and asked her to tell me. She told me that my lymph nodes had metastatic squamous cells (cancer), I went to get Jue and the doctor told us again, we cried and tried to comprehend what we had just been told. God forbid any of you get this news, it’s hard to process. Anyway, the operation was a success, and I came out the other side tonsil free and with a very sore throat. Not only did they take my tonsils out but scraped away the skin from inside my throat to do more biopsies. I was kept in hospital overnight as a precaution which was horrendous. The NHS is amazing but being on a ward where there seems there is a distinct lack of communication between doctors, nurses, and other staff so you struggle to get pain relief or any help when you want it. You also get no chance of sleep as they are most active between 10pm and 4am, taking your blood pressure every 30mins. Not a nice experience. Now I had 2 weeks to recover from the tonsillectomy which I thought was excessive, but it turns out, tonsillectomies are very painful for adults. So, when all the powerful hospital drugs wore off my throat felt like it was on fire while swallowing a sword. It was bad.
So, at the beginning of March, I got told formally by my ENT consultant that I have head and neck cancer, he broke the news to me like I didn’t already know, but we’d already established the worse. The saving grace is that I was curable (stage 2) The cancer was lazy and had decided to have a rest in my lymph node in my neck (at which point was now getting bigger, just a slight lump in my neck) - So, lots of treatment, drugs and rest and I’ll be good as gold yeah? The Macmillan nurse reassured us that I’ve got a very good chance of whipping the cancers ass and we’ll be ok. At that point I thought, a bit of radiotherapy, a bit of chemo and I’ll be right as rain… How wrong was I.
Sitting down with my Oncologist, she rattled through my treatment outlining all the possible dangers and side-effects that the treatment will have on me. If you really had a choice you’d say “thanks, but no thanks, I’ll skip the possibility of getting a brain tumour within 10 years” - But if you want to give yourself a chance of living then chemo/radiotherapy it is. Before treatment started, I had to have a couple more scans, just to check the cancer hadn’t decided to move around. I also had to have a mesh head/mask fitted. This is put over my head and shoulders so the radiographers can clamp my head in the same place every time I have radiotherapy the radiation hits the exact same spot every time. Treatment started on 10th April for 6 weeks. Radiotherapy Monday to Friday and then chemo every Tuesday. My Oncologist signed off by saying “If you thought your tonsillectomy was painful then this is going to be on another level” Great! “You’ll also need to have an operation to fit you with a radiologically inserted gastrostomy (RIG). This is basically a tube that sticks out of your stomach where you inject liquid food and medication. I didn’t like the idea of this but as a precaution, if at any time I can eat or drink orally due to pain and swelling then I can still get my calories and meds.
In the middle of all this treatment I get told there is a nodule on my lung from previous MRI scan. “Nothing to worry about but we’ll scan you again to make sure.” - 19th April I had another CT scan, turns out, it was nothing to worry about, but we thought I had lung cancer for a couple of weeks. Once you are in the cancer club, you think every aliment is now cancer related. Treatment was hard and like Groundhog Day. Most radiotherapy sessions were at 7.30am so we were getting up very early to get to Lincoln Hospital. The first chemo session was fine, and they give you steroids for 3 days after the session to boost your energy levels. The side effect of the steroids for me is that I was wide awake for 24 hours and, well I can’t post the other side effect!
Throughout the course of the treatment the pain, tiredness and nausea got worse and worse. So, the drugs started to add up and get more and more powerful to the point where I was alternatively taking painkillers every 2 hours throughout the day and night. The second week it all hit me, and I was completely useless, tired, and fed up. Everything in my mouth and throat started to change and eating started becoming a problem. My saliva glands and tastebuds stop working, so eating became an unenjoyable and painful experience… Even drinking water became too painful. This is when the feeding tube saves your life. Everything goes into your body through a tiny tube using a syringe. This process became very tiresome and hard especially trying to inject meds into my stomach throughout the night. I was supposed to be taking in 3500kal every day to help the healing process. This is impossible through a feeding tube. By this time, I’d had my delivery of Fresubin high calorie shakes in lots of delicious flavours which I lived on for the next 12 weeks. The psychological effects of the feeding tube are not very nice, you feel very pathetic and found it hard to want to use the feeding tube. I would do anything to not use it. This is where my wife (Jue) stepped up and made sure I got all the food and meds I needed through that tube. We argued at the start but then I realised this woman is saving my life, so I swallowed my pride, stopped moaning and let her inject me with food and meds. 4-5 weeks into treatment and it got very difficult, but you just get on with it. The hospital had given me every ointment, cream, gel, mouthwash, and painkiller known to the medical profession to help with the pain, dry throat, sore neck, nausea, fatigue… And a nebuliser! A face mask that pumped salt Walter mist down my throat. This contraption was supposed to help reduce/thin down all the mucus that was gathering in the back of my throat. It worked, it helped. So along with al the mouthwash and gel solutions I managed to get my throat feeling un-clogged.
This continued until the 21st of May (6 weeks of treatment) when I ‘rang the bell’ This signifies end of treatment and NOT end of the cancer nightmare. As we were getting to end of treatment, I had my usual blood test a few days before chemo (you must have this to make sure you have enough good blood cells to fight off the chemo and stop it from killing you. This occasion, my bloods were bad, so bad I had developed sepsis but wasn’t aware of how ill I was due to mistaking taking steroids in the night rather than my anti-sickness meds. It’s the same bottle, easy mistake to make at 4am. Steroids are brilliant at making you feel invincible, so I felt completely fine until they wore off and I was laid up in a hospital bed on a drip for 2 nights. Again, the system wasn’t great but I’m thankful that I eventually left hospital fully recovered and feeling ok. The next 2 weeks I was recovering while the treatment intensifies to its peak painfulness and then started to ease off over the next 4 weeks. Eating and drinking became possible again, so the feeding tube was removed to my delight. I won’t miss that thing. So, 6 weeks treatment, 6 weeks recovery and then back to work on the 4th of July. And then we had to wait for 12 weeks until we find out if the treatment has worked.
12 weeks of not knowing is torture, the stress and anxiety builds slowly. I kept busy at work and tried to do social things as much as possible although eating was still a problem, and not tasting food really puts you off eating. So, no appetite and only eating bland food really helps with weight loss. Every cloud, eh? I started going to gym to build up strength and going on walks to help with fitness. Cancer treatment really buggers your fitness up. I’m still very unfit and it doesn’t take much to get my heart racing now.
By now, the long-term side-effects started rearing their ugly heads… Lymphedema, yes, I now have a fat neck every morning because my lymph nodes around my neck are fried and now are useless. I must wear a compression neck brace and perform some massage techniques to circulate the lymphatic fluid away from my neck. This is part of my morning regime now and just another thing I must do for the rest of my life. Trismus, this is more commonly known as lockjaw. My jaw aches a lot and I can’t open my mouth nowhere near as much as I used to. No more bit bites from a big burger. Food tends to hit the side of my mouth now and fall back on the plate which isn’t good table manners. I have to put little bits of food into my mouth now, so it takes twice as long to eat my food, coupled with the fact I have little saliva now, eating is a chore. A pint of water is needed to wash down a slice of toast. On the subject of food, my taste bud got zapped big time and pretty much stopped working for a while and now they a have started to regenerate , I have the tastebuds of a 5-year-old. My love of a chicken madras and a 12-year-old single malt can no longer pass my lips as the heat and the alcohol is just too painful. Sad times, hopefully my tastebuds will get back to normal, but I’ve been told this could be unto 2 years and even then, they could never go back to how they once were. So yes, food tastes rubbish, so cooking is a nightmare because my smell has somewhat got better but that still does not make my mouth water. Food smells great but tastes of nothing. Rubbish. I get ringing in ears, weird but it can quite loud and annoying when I’m trying to listen to Eastenders. Quite useful though when Jue is asking me to do some cleaning… hey?, what? Sorry I can’t hear you. Pins and needles in my hands is the latest one, apparently chemotherapy is the culprit but I’m getting this one checked out. It maybe something to do with my blood? Oh yeah, I have Anemia, lower than normal healthy red blood cell, so it’s probably that. One last thing as the scar tissue around the back of my throat which make is hard to swallow and gets easily blocked with food. It’s a constant reminder of the trauma I’ve been through and any sharp or tickly sensation in my throat gives my cancer anxiety straight away.
Before I knew it, I was back at the ENT clinic where my consultant gladly stuck his little camera up my nose and down my throat to check out what was happening. He gave me the thumbs up, and the language therapist also said I have beautiful vocal cords which was good news. They could say whether my cancer had buggered off until they had scanned me so 2 days later, I was back in the MRI scanner. If you’ve never had a MRI, imaging being squashed into giant metal can while a group of angry cobblers pummel the side of the can with their hammers. Next day I was having a PET Scan. This one is where you get injected with radioactive juice first, so everything shows up nice and bright on the scan. You must stay away from pregnant women and children after this scan. Then it was the standard 2 week wait for the big results! This is where the NHS have been outstanding. My scans and appointments have been super quick and to help make sure the cancer it dealt with as quickly as possible.
29th August 2024, results day. We’ve been waiting for this day for a long time. I was quietly confident as I felt good, my throat was getting better every day although I’d sometime get a sharp pain which just made me think that the treatment hasn’t worked. This is going to be an ongoing thing now, whenever I get a sore throat, I’m going to think the worst every time. So, we sat down, and we get “I have good news and some OK news” What’s OK news? The treatment was 90% successful, that’s pretty good yeah, but it wasn’t the 100% we were hoping for. There were hotspots on the scans which could be scar tissue, infection, or cancer. Great! So, we had to wait another 6 weeks for these hotspots to calm down, disappear or get bigger so we’d know for sure whether the cancer has gone or is still active. Another 6 weeks of worry, stress, and anxiety. My ENT consultant assured me that cancer doesn’t kill patients, stress does! You’re telling me if you had cancer, you wouldn’t be stressed out! This news was so depressing. We thought we had done it and we were going to walk out of that clinic cancer free… but no, cancer has a knack of throwing curve balls at you. So, we waited, worked, and worked to keep busy and went on the holiday that we thought would be the cancer free celebration.
5th October, one final scan to check the hotspots. PET scan with radiation. I’m pretty sure I should some sort of superpower now with all the nuclear juice inside me. Back to the ENT clinic on Thursday 10th October (a date I will never forget). This is it, the big day. We were now convinced that all the treatment and after all this time it hadn’t worked. It was a hard day, earlier we had been to Nana Toby’s funeral in Scunthorpe which was really sad as we loved her dearly and will miss her a lot… then we had to drive to Lincoln to get the final, final, results. While waiting for our appointment, the MacMillian nurse came over and started talking about holidays which I thought was odd and she was just trying to ease the blow of more bad news. Jue then mentioned we’d been to her nan’s funeral earlier and then she said it. “I’m not obliged to say but your day isn’t going to get any worse” which a little glint in her eye she walked off. Jue and I looked at each other and knew then that everything was going to be OK. We walked into the ENT clinic and without even a hello my consultant bellowed “we have good news!” I could’ve drop to my knees. I sat down and before I had chance to comprehend the massive weight that had just lifted, my consultant was waving his little camera in front of my face again. One last check and we got all clear from him and the language therapist. That was it. We have 100% response to the treatment, no cancer. I was cured! We cried. My consultant went to shake my hand, I pulled him in and gave him a big hug and told him I love him. You do funny things when you are completely overwhelmed.
I must go for 6/8-week check-ups for the next 5 years but I’m happy with that and now I can (as my consultant said) “Go live my life”
Thank you to my gorgeous wife, Jue. I couldn’t have done this without her love, support, kindness, and her complete ability to be selfless and put me in front of everything else. Whilst doing her job she managed to keep the house looking nice and looking after me in my darkest times. She really is a superwoman. Thank you to all family and friends who have checked in with me every day and helped when called upon. Thank you to the NHS and all the wonderful staff at the ENT, oncology, radiotherapy, and chemo units. The language therapist and dietitian nurses. You fixed me.
If you’ve read all this and you or know someone that is going through a cancer journey, then I sincerely wish you all the best and I hope you have a successful speedy recovery. I wouldn’t wish Cancer on anyone; it is a bitch but we can beat it. X
