Stories

This is the third instalment of Anne's story. This time it is about her radiotherapy treatment which was particularly hard for her because of the previous surgery. The aggressive nature of the cancer made extensive radiation necessary. 

Next step on my journey is radiation and I have been told it is imperative that I have it within a 3 month time frame and have been warned me that it will be brutal. It has to be very intense due to the fact my tumour was aggressive and very fast growing (from CT scan to surgery it had grown over 50 %). It was also undefined and had started to break up so he wanted to be sure we covered all areas. He was concerned with it getting into my brain and lymph nodes.

April 26th

I have an appointment with Radiation/Oncologist Dr Chan. He goes through my radiation program with me. I am to have 60Gy/30 fractions over 6 weeks to nasal passage and bilateral cheeks.

Dr Chan reinforced what Professor Tan had told me and warns me of the side effects : I could get burning of my skin, lose my sense of taste, get dryness of the mouth, dry eyes, tiredness, ulcers in my mouth, difficulty in swallowing and eating.

Towards the end of my treatment I would definitely require feeding with a PEG tube and I would be in hospital, no maybes about this.

I was very adamant that I wouldn’t as I was stubborn and determined which would see me through.

He shook his head and said we will pick you up when required. If I had any problems I was to tell them as there were things they could give me to help me through. I would also be seen weekly.

April 28th

Over  to Palmerston again to have my mask made and tattoos done.

My appointment is 11am and I am told I will be there until 4pm. The staff are all really nice and we get through all the things relatively quickly. The only problem is when making the mask. The stuff they use is soft and wet but as it dries it becomes hard and pulls tight. I had to have a tube in my mouth and as the mask was drying it pulled tight and the tube was digging into the sensitive part of my mouth where the gum had been removed. Very painful but now I have my pillow and my mask ready for the next stage.

May 18th

Started my radiation today and this is what it looks like. I have been given health non-tonic cream to moisturise my face.

May 26th 

So I have had my 7th radiation treatment & my face is blotchy with a distinct mesh like pattern. Blisters are forming on my nose, my nose is bleeding, my face is tender The inside of my mouth is dry and very sensitive, nothing tastes right and food is sticking in my mouth & throat.  

On Monday I asked the nurses about it. I was sent to clinic where I was given a whole bag of different potioms. Oral mint moisturiser for my lips. I can also place a small amount on my tongue which will moisten it. Oralube spray for my mouth, Difflam for my throat and to relieve the aching jaw, Dermassist cream for my face and if the skin breaks I am to use Flamazine which I was also given. I am also given Xylocaine Viscous for when I have trouble swallowing or eating. My nose I am treating with nasal rinses to keep it as clean as possible.

June 2nd

As each treatment is given and by the end of this week my mouth is really sore and covered in ulcers, to the point I am struggling to eat but am managing to drink homemade vegetable soup through a straw.

My face is so swollen and tight that it feels like it is going to split. I also have extreme fatigue.

 3rd June

I wake up and my mouth and tongue feel very lumpy. Have a look and they are covered in white spots. Go to the chemist who has a look and gives me Nystatin for thrush. I feel really miserable and just want to sleep which I do except to wake up and take pain killers.

Go back for treatment on Monday and they don’t think I look very good. Explain about the thrush so am sent up to the nurse. She asks about eating and goes to give me some Xylocaine Viscous. Told her I already had some which Dr Chan had given me so she asks why I wasn’t using it so I could eat. I told her I couldn’t because you are not allowed to eat or drink within an hour of taking the medicine as the mouth will be numb and could result in burns etc.

She said very nicely, Anne you are a radiation patient and radiation patients ignore instructions which is why we give it to you.

Take the medicine (you don’t swallow it but use it like a mouthwash) and then have your meal but make very sure it is not too hot. So I tried this and WOW what a difference. I could eat without pain.

My lips were also raw and bleeding which made radiation painful as I had the tube in my mouth and it rested on my lips. It was excruciating so when I went the next day I asked about using the Xylocaine while I had treatment and was given the ok. So I would take two doses in empty tablet bottles, one for my lunch and one for my radiation. At least now radiation was no longer painful and I could eat my meals. Painkillers deal with the rest of the pain.

I must be doing something right as Dr Chan is happy with me. I am still losing weight but it has stabilised and is in lesser amounts so in view of what I am experiencing with my mouth, he is happy.

In fact he is amazed that I am eating meat, vegetables etc.

I mainly have soup and casseroles made with fresh vegetables. I put everything through the kitchen whizz so I can get it down better

I am still very tired but doing ok. By Thursday the 18th June I am having trouble. I lie on the bed for treatment and the whole room spins rapidly and I feel ill. It eventually stops but same happens when I go to get up after treatment.

Once again I am sent to Clinic. I am still feeling really unwell and Dr Chan admits me to the Cancer Day Ward with a view to admitting me. He thinks I am dehydrated despite me constantly drinking (I carried a sipper bottle with me at all times). I am given IV Saline but this makes no difference.

The doctor comes back and gives me some tablets saying, if this is the problem the tablets will help within half an hour. She thought it could be vertigo. Within 15 minutes the nurse came to me and said, you are feeling a lot better I can tell because you have colour again and look 100% to what you did. She was absolutely right the room had stopped spinning so now I had to take meds for vertigo.

The radiation had damaged my ears. I was allowed home.

I finished radiation without any further problems apart from loss of hearing.  My face at the end of treatment.

The sores below my nose are where I had sutures and the radiation has broken them down.

I have survived and have not been admitted to hospital or had a PEG for feeding much to Dr Chan's amazement. He even sat and asked me what I ate to avoid it.

I think using the Xylocaine to enable me to eat was a huge factor and eating nutritious food. I still have side effects and some may be permanent. The dry eye, burnt skin, sores under my nose, bleeding lips, vertigo, ulcers and thrush and taste have all cleared.

I still have dry mouth, hearing loss which may be permanent, nose bleeds, and my nose has totally collapsed and fused itself so I am unable to breathe through it. I have also gained scarring on my lungs.

I have had 2 CT scans post radiation which show I am clear of cancer.

I am broken but not out. I am disfigured but not down. My face does not define me.

The next step on my journey is reconstructive surgery which is already in the planning process. Professor Tan is consulting with his colleagues and making me a 3D nose. This, he has warned me, involves 3, maybe more surgeries and will involve taking cartilage from my ribs and tissue from my neck and forehead. I see him again in April so should know more then as to when this starts.

Another year of huge challenges but I am grateful as I have survived.

Anne is seeing Professor Tan very soon to have the first of her reconstrutive surgeries. 

Diana Ayling

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