Rebecca's Story: Living with Head and Neck Cancer
Hi, my name is Rebecca and I was diagnosed with tongue cancer in April 2018. I’m writing this blog to raise awareness of head and neck cancer, and to give hope that there is life after cancer. I had tongue cancer, which is incredibly rare in people of my gender, age and lifestyle, and I want to reiterate just how important it is to trust your body. I’ve been cancer free for 11 months and I’m enjoying my life again. Don’t get me wrong, life isn’t always rosy; I have good and bad days, but on the whole I’m doing well. I feel like I’ve been given a second chance at living – corny as it may sound. I had to have a life changing operation to remove the tumours from my tongue. The operation also included a neck dissection, tracheostomy and a skin graft – which was used to reconstruct my tongue called a free flap.
This blog series will document my original symptoms, diagnosis, treatment and life after cancer. I hope you find it interesting!
Blog 1 – The Beginning
For the last 8 years, I have had issues with my tongue. I had a sore spot in my mouth and a funny looking white patch on the surface, which never seemed to go away. After a few months I went to see my local dentist and they advised it could be a case of oral thrush. I was referred for a biopsy which confirmed the diagnosis of thrush. After taking a course of treatment, the thrush cleared up completely but it would flare up from time to time.
In February 2018, things really started to change for me. I had just returned from a romantic trip away to Rome with my partner. I got off the flight and felt so sick and shaky, but I just put it down to a bad flight and nerves. Once we got home I was feeling even worse. I couldn’t stop retching and I felt like my whole body was shaking. At one point I retched so hard that I made my tongue bleed!
The doctor examined my mouth and said she thought it must be the thrush and gave me some stronger medication. She thought the thrush had become embedded in my tongue and I needed a two week course of medication to clear it up. She also sent me for a blood test and swabbed my mouth; both of these results came back as “normal”. However, the pain in my mouth was getting worse and one of the lumps was rubbing against my wisdom tooth. My dentist thought it would be best if I had another biopsy. I remember joking with him and saying “surely they won’t have to remove half my tongue” - how ironic!
Blog 2 - "The best and worst week of my life"
The Easter holidays arrived and I received a letter from the hospital with an appointment. I remember my Mum being pleased it had fallen on the second week of the Easter holiday as we were away the first week in Orkney visiting my partner’s family. That week was the best and worst week of my life. The best because my partner proposed to me with the most beautiful ring and the worst because by this point I was in so much pain, I found it so hard to eat and talk. I couldn’t enjoy my engagement, all I wanted to do was curl into a ball and sleep, but we had so many activities planned that I had to drag myself out every day. My tongue had also started to bleed regularly, and I could barely eat. The pain was so overwhelming. I would walk around clutching the right side of my cheek. I was desperate to have my hospital appointment and get things sorted.
The day my appointment arrived I remember feeling nervous, but hopeful that I’d be given some different medication and it would all clear up (yes I was still being optimistic even though deep down I was having doubts). As soon as the registrar looked at my tongue, he said “I can’t be sure that’s benign”. I couldn’t process what he was saying and in my head I was thinking “they have to give the worst case scenario”, “I can’t have cancer”, “I’m not sick, I just feel worn out”. I was told that I needed to have another biopsy and left the hospital crying. Even at this point I still refused to believe I had cancer. I kept thinking “how am I going to manage this pain and do my job?”. I had to be signed off from work because I needed time to recover from the biopsy.
Two weeks after the biopsy a letter arrived from the hospital. I was so nervous as I opened it. The minute I saw the words you have an appointment in June I was dumbfounded. After all the worry and strain, everything was going to be okay. I can’t begin to describe the relief I felt. After dancing around my kitchen for a couple of minutes, reality hit and all I could think about was how am I going to put up with this pain for another six weeks! I decided I needed to ring the hospital to try and move my appointment forward. I spoke to a lovely lady who was covering reception. I remember telling her how relieved I was that my results had come back and my appointment was not an emergency. She said that a nurse would contact me the following day so I could discuss moving my appointment. The next day I was so upbeat and optimistic I kept thinking "I’ll be getting this sorted and can go back to normal soon". Then the Nurse rang…
Blog 3 – The Results
You can never prepare yourself for hearing the words "It’s cancer". I sat in the consultant’s room trying to process what was happening. At first, I kept fixating on the appointment letter I received. I kept thinking “how could I have cancer and have an appointment in six week’s time?”, “do they have the right person?” (I knew deep down they did). I felt like my body was alien to me. “Am I going to die?”, “Will I lose my tongue?”, “How will life ever be normal again?”. I wanted answers to all these questions but didn’t want to hear them. I felt so overwhelmed with different emotions, I kept flitting between feeling so sick with worry, to relief that I finally had a concrete answer, and something would be done about it.
My world had shattered into a million pieces. I remember saying to the Consultant “I can’t have cancer, my life with Craig (my new Fiancé) is just beginning!”. Saying the words, “I have cancer” felt so surreal. I remember pacing the floor of my mum’s house for hours on end that day. I was an anxious mess and had a constant sinking feeling in the pit of my stomach. The next few days were a blur and I would walk around in a daze. I had barely slept and felt jjittery. At first, I refused to get out of bed, dress and shower. I just couldn’t see the point in anything. I just kept thinking “people like me don’t get this type of cancer, why has it happened!?” No one could give me an answer.
After the initial shock started to wear off, I soon realised I need to fight this thing. I wasn’t going to let it beat me, so I gave myself a good talking to. I was determined to get my body strong, ready for surgery.
Blog 4 – Preparing for the Operation
I arranged to see my consultant to discuss what was going to happen next. Craig sat with me as we made a list of questions to ask (which was a very helpful strategy!). I knew at this point that the cancer was operable, and it had a high success rate. I literally had my scans a couple of days after my diagnosis and my operation two weeks after my diagnosis - it was a quick turnaround.
I was told that my operation would consist of a tracheostomy, possible removal of lymph nodes from the right side of my neck and a skin graft called a free flap. The operation could take around 8 hours or more and I would be in hospital for a minimum of two weeks. Firstly, on the High Dependency ward and then moved to the Head and Neck ward (C25). I was going to have two drains in my neck and the skin taken from my arm to reconstruct my tongue which would be bandaged for at least 10 days to allow the new skin time to grow back. I was also told that I would not be able to speak for at least a few days because of the trachea so I would have to communicate by writing everything down. I would also be fed via a feeding tube through my nose.
With any major surgery I was also told of the possible complications that could occur. All this information was a lot to digest, but my Consultant assured me that I would be able to live a normal life again. There were so many questions I had whirling around in my head. "Would I be able to speak normally again?", "Would I be able to eat and drink independently again?", "Will I really live a normal life again?"
In short, the answer to those questions was "yes"!
Blog 5 – The Operation and Hospital Stay
My operation was performed at Queens Medical Centre, Nottingham and lasted 11.5 hours. It was successful without complications. I was told by my surgeon that they had to remove the right side of my tongue to the tip. They attached the skin and artery taken from my left arm to form the right side of my tongue. I also had my right lymph nodes removed from my neck and my two back teeth removed so they were able to fit the tongue. I woke to find my arm bandaged, two drains coming out of my neck, a tracheostomy and a feeding tube.
My first night after the operation was on the High Dependency Ward. I was groggy, but very aware of my surroundings. I had a very intense tingling sensation in my left arm where they had operated. It felt like the worst pins and needles. All I kept thinking was I must move my fingers! As I moved in and out of consciousness, I remember searching for my buzzer (which I must have dropped) I started to panic, felt my chest tighten and was wheezing badly. All I could do to get the nurses attention was wave my good arm around in the air. Luckily, the nurse spotted me. I must have passed out because when I came around the nurse was using a suction device to clear my airways. I was then given morphine to help calm me. The following day I was transferred to C25. The staff there were amazing and so attentive. However, being moved did not agree with me and I quickly started to feel ill. I was told this was normal but still struggled to control my anxiety. Reflecting on this, I wish I had been more in tune with my body to know that I was having panic attacks; I think the number of drugs in my system at the time altered my ability to think clearly. I was in a permanent heightened state of anxiety.
Whilst recovering in hospital I went through a lot of ups and downs: I couldn’t speak for a week because of the trachea and was constantly dribbling saliva - I had no control over this and could only communicate through writing everything down on a pad of paper; my trachea would leak, and I would end up with crusty secretions around my neck; my arm was like a dead weight attached to me and I wasn’t allowed to bend or move it much; and I had very restricted movement in my neck. I couldn’t do anything independently and relied on the nurses to wash, dress and move me. I felt trapped inside my own body. It was so hard not being able to express myself. I had no sense of smell and did not realise how much I missed that until it came back. I would walk up and down the hospital corridor with a box of tissues in my hand to stem the flow of saliva whilst my partner trailed my feeding tube behind me. I was also physically sick, and nobody really knew why. I had lost so much weight, my pyjamas were hanging off me. It didn’t help that I also had a very bad case of diarrhea. This was highly embarrassing as I had no control and had to be cleaned up by the nurses. I’d gone from being someone who was so independent to a frail woman who couldn’t go to the toilet independently. My self-esteem was at an all-time low.
I struggled to sleep and the only thing that helped was my partner Craig who would sit by my side until the early hours keeping me calm. I was constantly worrying that the flap (reconstructed tongue) would have complications and I would need further surgery. Craig was amazing throughout and would sit by my bedside reassuring and comforting me. My team of people, family and friends kept my spirits up telling me that this was only going to be short term and before I know it, I will be on the road to recovery…they were right!
Blog 6: Eating and Drinking
My next task was to relearn how to swallow and eat again! This was a mammoth task as I felt there was no room in my mouth even for the smallest sip of water! I had been dreaming and imagining the coolness trickling down my throat and was so desperate to taste something again and get rid of the feeding tube. I couldn’t hide my disappointment when it came to take my first sip. I had no control of the direction of the flow. I tried tipping my head to the side to compensate, but it still wasn’t any easier. I felt so deflated and thought about the long road ahead of me. The following day the speech therapist arrived to do the swallowing test. I was so nervous and apprehensive and kept thinking "I will never get rid of this feeding tube". How wrong was I?! The therapist taught me to press my finger over my trachea hole, so I could feel my swallow. I was amazed that I could take a normal sip of water and swallow it down. I was then allowed to try blackcurrant juice. It was the best thing I had ever tasted! Now nearly a year on I can pretty much eat and drink what I want.
Blog 7 – Returning Home: My Road to Recovery
It was a mixture of emotions for me when I was discharged from hospital. I was scared that something would happen, and I would not have the nurses and surgeons to rely on or comfort me. It took me a while to adapt to my surroundings, with meal times being a huge effort in particular. I had to eat pureed food which I was struggling to swallow, whilst everyone else tucked into steak and chips. Initially, I struggled to walk up the stairs without getting out of breath. I couldn’t shower, dress, go to the toilet or brush my hair independently. My dental hygiene routine was particularly difficult as I could only use a child’s toothbrush to clean my teeth. I was so nervous that I would damage my new tongue that I couldn’t clean the area properly and I subsequently developed gum disease.
I walked around with my arm up in the air as my hand had swollen to twice its normal size due to all the fluid build-up. I wasn’t allowed to get my scars wet which made showering and washing my hair so difficult. My first check up at hospital as an outpatient was to find out if I required any radiotherapy. I had developed a big lump in the middle of my tongue which was painless and squishy to touch. I was so preoccupied and worried about what it could be that when I was told I didn’t need any radiotherapy it didn’t sink in properly. My Consultant was brilliant and confirmed that I had a “granulation”, which basically means a stitch ulcer, like an ingrown hair. Each day I noticed slight improvements, for example I had been eating all my soft foods with a teaspoon initially but then one day I picked up a fork without realising! It might sound silly, but it really was these little triumphs that meant so much to me.
Blog 8 – My Scars Are My Battle Wounds
My scars are healing well. However, I have "hypertrophic scars", which means that an excessive amount of collagen is produced at the wound site due to an over active healing process. My scars are red and raised. When I came out of hospital I had to allow as much air to my arm as possible, so the wound would heal. At night, I would cover it with a special gauze and a bandage. This was to make sure I didn’t rub or cause irritation to the scar in my sleep. I used Bio Oil on my neck and trachea scar. Once my arm healed and I was allowed to get it wet, I was given a cover for it called "Mediform" which is meant to help settle the scarring. I also used silicone scar gel for my neck. I also found applying a certain amount of pressure on the raised area, using circular movements for 2 minutes twice a day beneficial as well. I’ve been told that my scars will always be raised and possibly remain red, but I still use these treatments frequently.
Blog 9 – The NHS
I wanted to dedicate part of my blog to the NHS. In my opinion, they couldn’t have provided me with better support, and I want to reiterate how important I think it is to use the services available to help with recovery. You might think it’s not for you, but you never know unless you give it a go! Group therapy wasn’t for me, but at least I can say I tried it. There is so much support out there which caters for different needs.
When I left hospital my Macmillan Nurse, Sue Stringer, contacted me a few days later with an appointment to see a Clinical Psychologist to help me find ways to manage my emotional difficulties. At first, I was very apprehensive about talking to a stranger about everything I had been through. I wanted to forget about what had happened, but I knew I couldn’t. I was constantly worrying, and it was putting a strain on my family and friends. The cancer returning was always at the forefront of my mind. It was my biggest fear.
It has taken nearly a year to feel like “me” again and I know that my Psychologist, Dr Sanchia Biswas, has played a huge part in helping me get there. Therapy might not be for everyone, but for me it has really helped. I’m now able to face my anxieties and understand that they are just that - an anxiety. I learnt about the triggers to my panic, and that it did not mean that something bad has happened or is going to. I learnt to allow my unhelpful thoughts come and go, and sometimes to just let them be there in the background. Don’t get me wrong this is not an easy thing to do and some days I can’t do it and end up having an anxiety attack. However, when I start to feel calmer, I use the strategies I have learnt and talk myself through the anxious thoughts and feelings I am experiencing. Having a Clinical Psychologist to talk to, outside of my circle, who understood my experiences, made a huge difference. I was also referred to other services which included speech and language therapy, physiotherapy, massage therapy, group therapy and pampering therapy – yes that really is a thing! The speech therapist and physiotherapist also really helped aid my recovery. I was given regular exercises to rebuild my muscles in my neck and arm which I did daily. I now have full function of my arm and neck.
Blog 10: Returning Back to Work
My biggest concern was returning back to work and having to communicate for long periods of time, and I was nervous about eating in front of people. The Psychologist completely understood my worries and made some useful suggestions for my return to work. I returned to work just 5 months after my operation! I work in a secondary school as a Lead Learning Support Assistant, supporting special needs students. This was a huge hurdle to cross. The thought of entering the busy, intense environment of work again was very daunting. I had to adapt my role as I am unable to work full time now, but I still manage to work 3 days and I am coping well. My tongue does tire easily which can make communicating (a big part of my job) difficult, and so my duties are more office based at the moment.
I have also joined my local leisure centre and I have taken up Pilates which I really enjoy. If you are unsure of what service/groups are available to you and want to know more I would suggest asking your Macmillan Nurse. You can also browse this website for a variety of tools/techniques to help you manage with difficult thoughts and emotions.
I now plan to continue to re-build my strength and skills to help me live a meaningful life once again. Thank you for taking the time to read my blog and I hope it has been helpful for you, even if just a little!
Best Wishes,
Rebecca.