"I am just persevering" - Shaun's story

This week, we’re sharing Shaun’s journey with cancer, in his own words. You can also read his wife Janet’s story on Community news here

 Man sat outside a blue tent in a field smiling at the camera

In November 2019, I had two of my upper teeth taken out at my dentist.


In the following days I noticed a swelling in my neck so I went to the doctors where I was given antibiotics.


After a week of these there was no difference so I was given another course.


A week later I went to the doctors who sent me straight to A&E.


At A&E, I was given an x-ray and another course of antibiotics and told that I would need a scan in the next couple of days.

Within four days I was at hospital where a scan was done and three samples taken from my neck.


I was told I would get the results in a week's time.


Within three days I had an appointment.


Both myself and my wife were both unsure of the outcome but the consultant was straight to the point and told me I had cancer.

This came as a total shock.


He told us that I would receive an appointment soon to discuss my treatment.


As we left the hospital, it suddenly hit me and my wife what we had just been told and we both burst into tears.

"This came as a Total Shock."

The most difficult thing for us to do was to tell our daughters and the rest of the family.


My next appointment was with another consultant who examined me but decided I needed to be anesthetized so he could examine me properly.

Following this I had a scan and then an MRI scan.


My consultant told me he couldn't find the primary source of the cancer so I had to have a PET scan and this is what found out I had cancer in my left tonsil.


I then saw my consultant again who suggested a program of radiotherapy and chemotherapy.


I then had a meeting with a consultant from the Freeman Hospital and a Macmillan nurse who explained all about the treatment, six weeks of radiotherapy Monday-Friday everyday, chemotherapy every Thursday for six weeks. So I signed the consultant form.


My first appointment at the Freeman Hospital was having a head mould made, then the next appointment was to have the mesh face mask made.


I was then sent out a schedule of appointments.


On Thursday 16th January, I spent five hours on a drip having chemotherapy and then fifteen minutes having radiotherapy.
At this time, I was still working and managing at work.


The following day I was back at the Freeman Hospital having radiotherapy.


You are given Saturday and Sunday off to recover.

 Man and woman smiling at the camera

After a couple of weeks, I felt I couldn't work anymore and had to stop working.


The following week I noticed that I was struggling to eat and losing weight, so I was admitted to Sunderland Hospital to have a nose tube fitted.


I was in there for a few days then discharged.


Every day I travelled to the Freeman Hospital, I was picked up by Daft as a brush who are a voluntary team.


I would have my treatment then taken home.


After about three weeks that's when things changed for me.


During the night was the worst for me, I would just dose off then I would feel a sudden urge to cough and bring up loads of gunk and phlegm.


This would go on most of the night so I got no sleep.


This has gone on for about four weeks now. Bringing the phlegm up.

"That's when things changed."

As I was being fed by tube, sometimes I couldn't get a P.E. test done so would have to ring the hospital for advice.


A couple of times we had to go through and get x-rays to make sure the tube hadn't moved out of my stomach.


Whilst having my treatment, my immune system was so low I've picked up four chest infections and had thrush in my mouth twice.


One Thursday when I went to hospital for my chemotherapy I was so ill I had to see a doctor who stopped me from having chemotherapy, as she said my body was so low it would be dangerous for me. This meant I had to miss one session.


On 26th February, I finished my treatment and rang the bell.


At least now I didn't have to travel backwards and forwards to the hospital which was tiring in itself.


It was time to recover.


Where I had been having the radiotherapy on my neck, I noticed my neck had turned bright red and was burning.
I had already been using the cream the hospital had given me.


My skin was peeling like I had sunburn.

"It was time to recover."

One night I was trying to sleep but I had stabbing pains in my back which were intolerable, so my wife rang 111 who made an appointment to see a doctor.


When the doctor examined me, he straight away phoned A&E and told me to go there immediately.


When I got there, they admitted me and put me on a ward.


I was sent for a scan and I found out that I had a blood clot on my lung.


This was why I was getting so much pain.


I saw the consultant the following day, and they told me I would be on medication the rest of my life for this condition.
I asked him how I had got his clot and he said it was with the cancer treatment.


I spent six days in hospital.


I am now out of hospital but still unable to eat or drink through my mouth as it feels like a furnace and broken glass when I swallow.
I have been putting cream on my neck several times a day and it has cleared up.

"I am just persevering."

As this Coronavirus has turned everything upside down all appointments have been cancelled, so I am just persevering, washing my mouth four to five times a day with special mouthwash and toothpaste.

We want to thank Shaun and his family for sharing their story with us. The Community is a place where anyone who has been affected by cancer can talk openly with others who may have been in a similar situation. Our Head and neck cancer group is a safe and supportive place to connect with others if you’re affected by this type of cancer. 


Do you have a story to share? Let us know at community@macmillan.org.uk.

Anonymous
  • <p>So good to hear a positive outcome, 6 years ago I had the same problem antibiotics were prescribed it didn&#39;t go away went back more antibiotics were prescribed a month later I was diagnosed with neck and tonstle cancer, discribed as aggressive my wife and I cried our eyes out, but after help from macmillan, and a neck dissection and tonsiletermy chemotherapy and radiotherapy I count my self one of the lucky ones, all my procedures were done at the queen&#39;s Centre in Cottingham, my surgons and everyone else were first class, I think we all come out with sideafects but we are lucky, I still feel guilty surviving when there is all those young people suffering, but I owe my life to macmillan and all the nurses, doctors, staff and surgons&nbsp;</p>
  • <p>Such an inspirational story, my dad was diagnosed with lung cancer in 2018, I went with him to all his appointments, he was hospitalised twice with pneumonia as he had no immune system due to chemotherapy, he died in 2019. I miss him every single day</p>
  • <p>Hi Shaun, having been through similar treatment to you, for neck cancer, I finished my chemo and radiotherapy in September so 5 months previous to you. I&nbsp; can only say that it does get better, but takes time.&nbsp; Take your time, as they say one day at a time, be kind to yourself and believe that although the treatment and side affects are so painful, frightening at times and exhausting, it has all been worth it.&nbsp; Appetite is starting to improve and now gaining weight and beginning to feel something like me again. I have been having some &#39;alternative therapy&#39; sessions which I feel has been a huge benefit to my recovery and general well being.</p> <p>We are so lucky to have such a wonderful NHS Service, my treatment was at The Royal Stoke Hospital, the whole Oncology team are amazing as are the support services, they have saved my life.</p> <p>It&#39;s unfortunate that we have to continue our recovery at such a strange time, but enjoy the love and support of your family and friends, although this may be by social distancing, hopefully it won&#39;t be to long before you are well on the way on your journey to full recovery. Wishing you all the best, stay strong, you&#39;ve done the hard bit, stay safe.&nbsp; Kind regards</p>
  • Shaun such a similar story to mine...was diagnosed Iin Aug 2018 with head and neck cancer..very similar treatment...had to feed myself through a tube for 6 months...but it does get better slowly...my breakthrough moment was when I managed to drink some sweet coffee...I then thought I could dip a custard cream in that coffee...from there I became addicted to them..a year later I'm living a normal life...I've gained back 3 stone of the 4 I lost and I'm back working full time...I will never be back to what I was but you would never notice...I enjoy my food now although my tastes have changed.  I took up walking to boost my fitness and this not only helped but also gave me time to process what I was going through.  I am now a better person....and no longer get distracted by the ups and downs of life.  Find what makes you happy and do that...what I found out was it's not money that you will run out of but time .

    Good luck and stay safe 

    Chas 

  • <p>Shaun big thanks to you for sharing your story.&nbsp; You are truly Inspirational and keep stay.&nbsp;</p>